ANNUAL
REPORT
2023-2024
14
•4
Spinal
Muscular
Atrophyuk
SUPPORTING • INFORMING • ADVOCATING
Chair's Report
I look bock over the lost12 months with great pride at
the achievements of SMA UK, a year in which amongst
other things Saw a seamless transttion betwee
Angela Smith-morgan and our new CEO, Giles Lomax.
Our Support Teom, once ogoin, has delivered on
exceptional service to all those affected by SMA and
ontinues to be ot the core of everything we do,
whether it be providing practical or emotional support
to onyone offected by SMA or lioising with
neuromuscular advisors and other healthcarè
professionols to ensure that all those living with SMA
receive the best possible care.
The team have olso advocoted on several key topics
incfuding ensuring continued access to disease-
modifying treatments through the NICE multi
technology assessment (MTA) process, an area of
work we w411 keep working on behalf of the community
so overyone living with SMA should have access to a
treatment if they wish.
The Charity was thrilled to secure a grant from the
Motability Foundotion whTch enabled us to lounch the
SMArt Moves programme supporting the community
to oc¢ess gronts for wheelchairs ond other pie¢es of
much needed mobility equipment.... A real game
honger!
Community engagement continues to be o major
focus with our Picnics in the Porks, the adults 'Resonate
wèekènd, hèld in Exmoor in July ond Our ofilinè
community networks. In addition, we hove launched a
new Adult's Advoccxcy Steering Committèe which is o
key platform for us to gather insights and key
advocacy priorities from the adult SMA community.:
In November, the second terms of four trustees come
to on end ond following o re¢ruitmerJt prooess we
appoi nted Maryann Aspinal, Tracey-Jane 8ailey-
Burnley, Rogg Hovey, Jènniè Shehan. and Ben Williams
as new trustees. l am excited to have them all as part
of the board. You can reod more about them on our
w8bsite.
For the Ilth year running, we were proud to be oworded
our PIF accreditatton (Previously the Information
stondard) which confirms that our SMA related
information has been through a professional and
thorough production process ond is based on reliable,
up-to-date evidence which is communicated clearly.
SMA UK is here to represent unyone living with and
affected by SMA. During the year we launched our new
and rebranded website and social media channels,
which I hope you agree showcases SMA UK as a
rftodern, forword thinking ond (Jgtlè ehority. Wé htsve
also reviewed our internal data management systems
and reviewed our organisational structure which will
enable us to serve the community as b8St as possible.
Of course, SMA UK con't operate without you- our
generous donors, our wonderful supportefs, our
incredible volunteers, and of course our amazing team
who hove all WOTked so tirelessly to keep on delivering
for the SMA community. Thank you!
Newborn screening continues to be a priority tor SMA
UK and we were delighted that thè Newborn Screening
committee (NSC) announced in June that on In-
Service Evoluation (ISE) would toke plijce. In addition,
several SMA UK colleagues were invited tojoin the SMA
in-service evoluation (ISE) partnership boord and
associated 3 sub-groups to provide expertise and
insights into how ond when newborn screening for
SMA will be delivered in the NHS across the UK. We will
continue to do everything in our power to 9et SMA
included on the bloodspot programme.
The success of SMA UK depends on the hard work and
dedication ol so many people including our volunteer
trustees. It was with great sodness thot in October we
learned of the deoth of one of our trustees. Clare Gray.
Clare was o powerful advocote not only for the SMA
community but also for the èntire disabled community.
She will be greatly missed.
Murk Dearlove
Chair of the board of Trustees
CEO Report
As we draw 2023124 to o close, I can look back on my first
year as CEO extremely positively, and our annual report
will reflect this witti some of the amazing work the team
have donè on bèhtslf ofthe SMA community.
Despite the cost-of-living crisis, pressurè on the
charity sector and impact on securing funds, SMA UK
has gone from strength to strength generating income
to deliv8r vital programmes, projects and services that
the SMA community really want and need. Over the
last12 months, and moving forward, we will continuolly
review the volue in the pound to ensure that funds thot
are raised directly benefit the SMA community.
I would like to publicly thank all of the staff for their hard
work and dedication, we really do have a fantastic team,
and l am extremely grateful for our incredible supporters
and donors as withoutyour efforts we would not be able
to carry out our vital work.
Giles Lomax
Chief Executive Officer
ADVOCACY
UPDATE
Evrysdi-
(risdiplam)
for oral solution
60mg180mL
(0.75 mglmL)
Newborn Screening
The Newborn Screening Committee recommends that
plann>ng starts for an in-s8rvice evaluation (ISE) for
newborn gcreening for SMA. The 'pilof will inform th8
economic modgl.
Spinraza"
Progress on this work was reported to the June 2023 UK
NSC meeting and committee members endorsed a 2-
fold recommendation for the projecys next steps to
simultaneously.
Attetition pharfPaCiSt: Evrysdi mu
COD5tituted wilh woter pnor to d
(nLJsinersen)
Injection
dèvelop a nèw comprehensive and flexible cost
effectiveness SMA screening modelling study for
the UK sereèning context
otsl krlurne èfier
start scoping an in-service evaluation
(ISE) of
newborn screening for SMA in real world NHS
services in the UK
NICE Multi-TechnologyAppraisal
for Risdiplam and Spinraza
Part ol the ISE is to create a number of sub boards
including the SMA ISE partnership board. IVS role is to
oversee the development of the ISE, ensuring it
provides robust eviclence to support a definitive UK
NSC recommendation.
What is our role as a patient organisation?
From professional discussions with industry and
linicians, it became clear that the clinical evidenco
was not fully reflecting the real-life experiences of
treatment for those living with SMA. Notably, the value
of stabilisation for adults and the importance of
access for all no matter the severity of the condition.
What is it?
The National Institute of Health and Core Excellence
(NICE) approved Nusinersen for funding through the
NHS in England in July 2019 and Risdiplam in August
2020.
This announcement is progress. Ifs a decision that
shows the impact of th8 work of the Newborn
Screening Alliance (SMA UK & MD UK}. Butwhilst
newborns will be screened for SMA during this
evaluation, it is not the final decision that we, the SMA
community negd now, and it does not catch us up with
the rest of the world.
This was on the condition that researchers would
collect more information from patients ond their
clinicians on how we11 it works, how safe it is and
whether or not it is good value for money. This was
because, at that time, the NICE committee did not feel
there wos enough evidence from the clinicol triols to
answer thèse questions. SMA, be4ng a rare disease,
meant the numbers of participants were not big
enough to satisfy a final recommendation.
Working olongside Treat SMA and MDUK, SMA UK led on
a response os a unified voice from the SMA
community whtch was submitted to the NICE appraisal
committee members.
The work started with ctn intormation webinar to inform
the community about the appraisal process and how
they could contribute their experiences and views of
Spinrozo ond Risdiplam.
UK SMA Newborn
Screening Alliance
Both treatments have been funded viatime limited
Managed Access Agreements (MAA)which come to
an end in 2024.
A survey was circuloted within the SMA community
based on the very specific questions the patient
orgonisotions were being osked by NICE.
People prescrtbed either of these drugs, have been
completing physio assessmerits, answering questions
and completing patient reported outcomes to creatè
clinicol data which will be used as evidence olong with
data from new clinical trials.
We received 145 responses to the carer survey and 115
rèsponsès to thè survey for those living with SMA.
The dato was anolysed and summarised ond a joint
submission will be submitted on the19th April 2024.
DisabilityAction Plan 2024
In July 2023, the UK government soughtvaluable
feedback fiom the disabled community regarding
their ambitious goal to transform the UK into'Th8 most
occess£ble place in the world lor disabled people,. SMA
UK took proactive steps to gother insights ond
perspectives from the SMA community, collaborating
with numerous other disobility-focused organizations
to compile a comprehensive response.
Following thorough consideration of all submtssions,
th8 government publi5h8d th8 action plan on 5th
Februory 2024. This plan outlines strategic initiatFVéS
and measures aimed at fostering inclusivtty and
occessibility across various sectors. For further details
on th8 action plan and its implications.you con flnd
more intormation here.
Genomics England's
Generation Study
WÈ wèrè delighted to sèè SMA is on the list of Ovèr 200
treatable conditions for the Generation Study.
Genomics England who ore running the study
describe the project as an "NHS-embedded research
study whrch aims to understand whether sequencing
babies, genomes can help to discover rare genetic
conditions earlier.-
Spinal Bracing
Through SMA UK social networks, it has been mode
clear thot diffèrent NHS Trusts across the UK have
different paediatric spinal care pathways. Several
families are going to the private sector to occess
braces that they perceiv8 to be more comfortable and
more efficacious. often from a recommendation from
another family, not a clinician.
The Generation Study. will sequence the genomes of
100,000 newborns to look for a specific set of rare
gÈnètiC conditions thtst offèct babiès tsnd con bè
acted on.
To raise awareness of this issue ond to lay the
found¢Jtiong for one of thé topics propogÈd for thè SMA
Care UK Project STrdA UK designed and circulated a
survey to the paediatric braced community. Dr Quince,
a research fellow form Sheff ield Children's Hospital
ogièed to anolyse ond summarise the data. The
findings highlighted the inequities in provision across
the country and have initiated a clinical survey which
will go to oll speciolist sites to establish what their
pathways for spinol care look like. The two d(xto sets
will be combined into a report which we hope will
facilitate trusts across the UK to work towards some
alignment in the field.
The study is not an alternative to newborn screening,
its purpose is to evoluote the feasibility of screening
newborns for a lorger number of childhood-onset rare
genetic conditions in the NHS, using whole genome
sequencing. It will be exploring the potential risks and
benefits of storing an individuol's genome over their
lifetime. We expect os many as 40 NHS Trusts ocross
England to porticipate over the course of thè study.
which runs until March 2025.
Adults Advocacy Steering
Committee
SMACare UK
Clinicions and Patient Groups want to establish a
Project (SMA Care UK) to update and implement UK
standards of Care across all ages. A proposal is due
to be finol¢sed in 2023 when SMA UK Will endeavour to
secule funds to support the first 3 years of the project.
To ensure that the priorities of the adult community
are heard and that we are representing all members
of the SMA community, we launched the Adult
Advocacy Steering Committee in August 2023.
Clinicians and Patient Groups want to establish a
project to update and implement UK SMA Standards
of Care across all ages und groups. The project would
oddress people's evolving care and monagement
needs reflecting devesopments around treatments,
ensursng that those living with SMA are centrol tg this
process.
Led by oul Head of Advocacy and Community, Portio
Thorman, and facilitated by soctal entreprerieur living
with SM4 Martyn Stbley, the voices we hear from the
working group will shope ond form the SMA Core UK
ro
aectand furthermore, will inform SMA UK'S long and
short-term strategic planning.
Childrens Book Project
We were delighted to be owarded o sponsorship from
Biogen to produce a new children's book all about
SMA. Althou9h SMA UK hove previously published
books"About SMA and Me" with the introduction of
treutment, these ore now out of date.
The main objectlves of the first 3 years of the
project would be:
To review the International Standards of Care
{SoC) {2017) with clinicians and patients to identify
key aspects of car8 that require revision l update
in light of the chonging SMA londscape.
Furthermore, with the possibility of newborr) screening
for SMA on the horizon it was felt we needed to
produce o non-fiction book focusing on-
The geneti¢s of SMA
Timeline ol scientific progression, how for
research hos come
How new treatments work on your body
Individual differences, why your SMA looks
different to someone else's
SMA health professionols and their role
Living with SMA and support
To establish an UK SMA Soc consensus for each
area of car8.
iy
To implement and disseminate a UK minimum
recommèndation for eoch aspect of care.
Address Ènequalities in care for f(2milies and adults
b8bNeen different sites across the UK by
campaigning for this UK standard to be accessible
to all poople who have SMA, no matter where they.
live.
The book wilT be due for publicotion in December 2024.
Identity orèos of trore where rther work I
8vid&nce I research is needed, and work with SMA
Europe ond other international groups to develop
new consensus statements for specific elements of
care.
How canyou help.
Learning from individual expeTiences Is $0
tmportant when trying to find best practtse. If you
would like to inform the diagnosis working group
of the SMA Care project by gharing your diagnosis
story, then our Head of Advococy and
Community would love to hear from you.
Link wsth ongoing internationol initiattves to update
the Soc recommendations based on the evolving
theropeutic fands¢ape.
Please emall portia.thorman@smauk.org.uk
We look forward to updattng you as the project
developes.
Partnerorganisations
SMA Europe
SMA UK continues to work with partner organisutions to
bring a united voice on issues which impact those
livsng with physical di8abilÉties. Working with umbrello
organisations like Genetic Alliance UK and MDUK we
can add the perspectives of those living with SMA to
policy compaigns such as improved coordination of
care, faster diagnosis and improved care provision.
Annual General Meeting Prague
In April 2023, SMA UK went to Prague to join delegates
from around Europe to look at developments made
over the last year and discuss the priorities for SMA
Europe movir¥g forward.
4th
SPIn Mus¢ular kn -
It was a fantastic opportunity to hear about access
to treotment ond theropies ocross Europe ond to
discuss what gaps still needed to be filled for the SMA
community. You can listen to a podcast about the
trip here.
SMA UK continues to play an active part in the AdLJIts'
and Childrens REACH networks, bringing the patient
pèrspective to them.
SMA UK continues to work with Industry partners. We
supported Roche in a Delphi pa.nel to gain expert
consensus on the healthcare resources required by
people14ving with SMA, the outcome of which will
inform their economic model for the MTA evidence.
,aL'
We continue to work with all three leading
pharmaceutical companies, ensuring we have regular
updates and taking on consultation work if aligned
with our strategy.
SMA Scientifi¢ Congress 2024 Ghent
This was a fantastic conference that brought together
speciolist clinicians, researchers, and industry and
patient odvocotes working in the field of SMA. Before
the event officially started representatives from SMA
UKjoined a global advocacy event with advocates
from over 50 countries around the world, and met
eorly COreèT rèsèor¢hers to exploill Ljftmèt nÈÈds in thè
SMA field.
UK clinicions and industry experts expressed their
gratitude tor the work SMA UK ore doing and how
much they volue the working relationships we hove
formed.
Working with James Sleigh. our scientific
correspondent who also attended, SMA UK shared a
SLtmmary of eight research projects from the
conference, read it here.
COMMUNITY
ENGAGEMENT
Picnic in the Parks
spin
MUStsJ
Atr
Summer 2023 saw the return of SMA UK'S Picnic's
in the Park events for anyone living with, or
affected by, spinal Muscular Atrophy.
214 people ottended three events, hosted in
Essex, Yorkshiie and Gloucestershire, giving
people an opportunity to connect with each
other and of course, the SMA UK team.
The positive feedback csnd sense of community
from these gatherings insptred us to plon even
more inclusive and engaging events for th8
future, ensuring that people affected by SMA
always have a supportive and welcoming
.community to turn to.
ffll.lw '
It was lovelyto meet upwith
people from last year and meet new
families too. It's so great to build those
connections and a support system so
you don't feel so alone.
RESONATE
J2023.
"I didn'tknowmanyother
peoplewith SMA before
Resonate, and being able to
spend time with others
experiencing similarthings
was realtyvaluable.
Resonate weekend
In July 2023, SMA UK was proud to launch our first
Resonate event, an adventure weekend for 21 adults
livÉng with SMA at the Calvert Trust, Exmoor.
The wèèkend fétstLJrèd u full ugènda of OC¢ÈSSiblÈ
activities like abseiling, archery, crote stacking,
swimming, and zip liningf Each actFvity was carefully
chosen to be both exciting and inclusive, a14owing
porticipants to push their limits and try new things.
I was also able to participate
in activities I didn't thinkwere
possibleforme. such as
abseiling and zip lining! It was
suchan amazingcouple of
daysand I've made some
brilliant memories- thank
you SMAUK!"
Sophie
Resonate 2023 wasn't just about the activities, though.
It was olso about building new friendships and
creoting lasting memories.
Check out the highlights and hear from participants
about their experiences at Resonate 2023 here.
dj
•*PP
LIVING
ITH SMA
PODCAST
IDULI.S
WhatsAPP
Community Networks
SMA UK'S WhatsAPP networks connect the
SMA community across England, Wales,
Scotland clnd Northern Ireland. They bring a
sofe, well moderated space for people
IEving With SMA in Similttr ¢ireumsttsncès,
who can support each other both
emotionally and praetically.
Living with SMA.
Podcast and Webinars
1236
SMA UK'S udvocacy, engagement, support,
information and Comms teams work closely together
to identify the big issues coming from the SMA UK
community across the UK.
Podcast
Dowloads
New Subscribers
+51%
IEEIIEIHS
The WhatsApp networks huve also been a
fantastic resource for advocacy purposes,
gauging opinion and experience through
polls and questionnaires. This has provided
insights for all of SMA UK'S projects and will
continue to do so in the future.
A topic is agreed and questlons are collected form
the community via our sociol channels. Through our
close relationships with specialist clinicians and
members of the SMA community we are able to
creat8 currenL informative digital content on
YouTube foT the SMA community and theif support
networks, both in the UK and internotionally.
YOUIG
ADUIIS
1.2K
31K
'Wotch Time
+124°
Views
+89%
22 25 86 39
Adults
Teenagers
Families
Young Adults
SUPPORT
SERVICES
UPDATE
Supportand Outreach Service
Support is ot the core of what we do at SMA UK. Over the past year the
Support Team has continued to ofter high quality practical and
emotional advice and support to anyone affected by SMA. We have
supported 255 individuals and tamilies across the UK and responded
Thè tetjm havè Supported fomiliég and indtviduals with one-off
onquires and with morè ongoing complex situations, often r8lated to,
for example their care ond support needs, education, employment
benetits, housing, adaptations, ar¢d equipment. We have provided
information on treatments and supported people in finding
information and further support with their hoalth and wellbeing,
stgnposting to others who moy offer help.
Thls map illustrates tho l.
spread of location where
people are supported.
The team have written supporting letters that explain the impact of
SMA on the individual and have requested that services respond
appropriatèly for that person. Our supporting lÈttÈrs, on mony
occasions have been successful yn securing o positive outcome for
the individual - for example maintaining a taxi service to and from
school tor an 8-year-o¢d boy, and on two seperate occasions,
ensuring that (J family received a full needs ossessment for their child.
We have attended meetings with adults and families, home visited,
and supported amotionally and practically lor as long as we hove
been needed.
255 individuals
with SMAand
families supported
across the UK
•••r
Nicola Beer joined the Support Team in August- she comes from a
health and social care background and ovér the last few months has
enjoyed getting to know the SMA community.
.1111
Ourworkwith partners
The Support Team continues to link with the
Neuromuscular Centres, Neuromuscular Advisors and
specialist nurses. We visited Winsford Neuromuscular
Centre, seejng whotthey do ond how we ¢on access
the support they olfer. We continue to link with other
charities and organisations to bring the best possible,.
support to the SMA community.
trl
Flexible Response Grants (FRG'S)
SMA UK offers Flexible Response Grants to families and individuals in need.
These are managed by the Support Team and are administered via two grant sehemes;
FRGI
FRG I, offers financial support to attend hospital for
treatment or medical assessments, and this year we
gave 47 grants from £20.00 to £656.00.
FRG2
FRG 2, offers financial Support with itemslservices that
are not met through other grantslfunding sources.
This year we gove 31 gronts from £74.17 to £1070.00
The largest proportion of these gronts have supported
hildren ond adults to access disease modifying
treotmenL There were also grants given in support of
acute hospital stays, spinal surgery, sleep studies and
oth&r assessments.
The largest portion of this grant provided non-NHS
equipment for exomple car seats with isofix ondlor
buggy bases. Go-to-SÈats, a Squiggles mot, and
mobile hoists. There were also smaller grants for
urgently needed household items, and Support to
attend events, for example Resonatg.
Toypacks
We hove sent out 22 toy packs to newly diognosed
babies, their parentslcarers. These packs contain
multl-sensory toys specially designed to stimulate
young babies and are given to families free of chargg.
SMArt
Moves
BY SMA UK
Motability
Foundation
Karol's Story
Empowering the SMA
community through mobility
Karol is a lively 2-year-old with SMA Type l. His mother,
K4agda, applied to SMArt Moves l.I tor help funding a
Panthera Micro wheèlchaii. Although they had a
Wheelchair Services voucher, they still faced an
outstanding balance.
Ally Allen became part of th@ teom this yeor, as
Community Grants Officer overseeing tho
administrution of our new SMArt Moves Grants.
We (JrÈ dèlightèd thut SMA UK hag been awordèd
grant from The Motobility Foundotion, giving us the
opportunity to assist people living with SMA in
purchasing mobility equipment and wheelchairs
through our SMArt Moves grant. SMArt Moves is split
into three grant-giving schemes-
To date, we have had 33 opplications for both manual
and powered wheelchairs, as well as for repa¥rs,
batteriés, tsnd tyrés.
SMAYt Moves stepped in to cover the remaining costs,
paying the supplier direGtly. Thanks to this suppor¢
Magda could order Korol's new wheelchatr. Here's
what Mogda had to say:
By working alongside other grant giving charities we
have supported several adults to secure funds to
purehose new powered wheelchairs. We have also
enabled families to access their child's first manual or
powered chair.
-1 am absolutely happy and gratefuy for the incredibly
massive help Karol received to get his first
wheelchair. A year ago, he was so weak that he
couldn't even sit, roll or touch his toes. Now, he is able
to move around in hys wheelchairl
SMArt Moves 1.1
Offering grants to fully fund powered
wheelchairs and manual wheelchairs
that Gost up to a moximum of £5,000.
Since receiving his new wheelchair, Karol is doing
brilliontly. He absolutely loves his wheelchalr. His
arms and hands are getting stronger, and everyone
is so impressed with how easily he navigates narrow
spaces and spins, even going backward is lots of funl
SMArt Moves 1.2
Offering grants of up to £5,000 towards
powered wheelchairs and manual
wheelchairs that cost over £5,000.
We are toking his Panthera to friends. houses so he
(Jn move independently (Jnd ploy with friends.
SMArt Moves 2
Offering grants up to £1500 for other
mobility equipment, including risers,
batteries etc.
Thonk you $0 tyiuch for makAng this POssNble, ond for
the huge support from Jo in the Community Support
Team when applying."
INFORMATION
UPDATE
Our Website
Our website pages are designed so that anyone can
easily find information about the causes, symptoms
ond effects of SMA olongside information about
treatments and care.
To make sure all our information is accurate and up to
date, we work with clinical experts and other hèalth
professionals, many of whom join us for community
webinars which answer quegtiong about health
matters.
Our 'Living with SMA. website pages respond to the
many questions the SMA community ask us. Topics
range from starting school and occessing work, to
leisure, trovel and adapting your homo.
We would like to thank the SMA community tor
engaging so generously ond openly with us to
highlight these important topics.
All our information pages were successfully integrated
into our new website in time for it's lounch at the
beginning of August 2023. Since then we have had
positive feedback from users.
New information pages
We published two now information poges for families
who have had a recent diognosis of SMA.
Between then ond 31st Morch 2024, OUT website top
'hits' were-
Hearing your Baby's DiognosES of SMA
Hearing your Child's Diagnosis of SMA
Page
Hits
Looking After Your Child
3,590
As we worked on thes8, we were very aware that
parents could find out that their baby has SMA as a
result of the Oxford-Thames Valley and Wessex -
Treatments & Research..
2,645
Trusted
Information
Creator
This meant thot wè had to carefully revkèw many of
our information pages to make sure they were
sensitive to this possibility.
About SMA,
2,622
P4tiÈnt IDFprmatlon Forurn
We wilT need to update them furtherwhen the National
Screening Committee's In-service Evaluation for
newborn screening of SMA goes live. We understand
thss is likely to be sometime in 2025.
In October we again passed the r8view that confirmed we remain a
Trusted Information Creator, accredited by the Patient Information
Forum.The PIF TICK Quality Mork helps people identtfy trustworthy print ond
digital health information: pifonline.org.uklpif-tickl
You can find these pages here.
Emergencycare Guide
SMA UK were proud to publish our'lnformotion Sheet
for Emergency Services, in August 2023, the result of
months of collaborative work with families living With
SMA and specialists clinÈcians.
NEW
RESOURCES
FOR FAMILIES
Children living with SMA may need extra support to
recover from common ailments, r&quirin9 emergency
care at their local hospitol. Frequently, frontline clinical
staff will not have come acr068 SMA and we were
hearing mony distressing stories from families obout
the difficulties in accessing approprrate care in an
emergency.
Our staff teamg worked together with clinical experts
to produce on information sheet for families to inform
paromedics, the A&E teom and clinicions working in
local children's wards. It provides informotion that will
asskst them with their assessment and care pathway
deveEopment. Carers can downEoad the document
from our website
You con find oll three informotion sheets in the
'Recently Diagnosed, section of our website here.
Getting your child who has
SMA readyfor school
Autumn 2016 morked the very beginnjn9 of the
possibility of disease-modifying treatments for SMA.
For children who have SMA Type I these have been
life-saving, and life-changing for other children who
hove SMA. Most treated children hove gained strength,
movement and better health. Though many do have
complex care needs: with appropriate support these
children are jotning mainstream schools.
The pock iriclude6-
A summary for schools about SMA
Examples of how information about children who
have different levels of need could be presented to
a school
Blank templates of these examples thot parents
can use for their child
As we have heard from families, however, getting o
sehool ploee, is not always eosy. Therefore, wè
developed a new resource for families, 'Getting your
child who hos SMA ready for school. to help families as
they start to think about primary education options. It
was developed with ideas and input from Natalie
Smith, Clinic(Jl Nurse Specialist ot Greot Oimond Street
Hospital, ond families who had experienced this
journey already. Thank you to them.
Our staff worked with clinical experts and families to
create a guide called 'Getting the Right Support and
Educotion, os the educotion systems Qfe corrkplicoted
and varies across the UK.
Communitywebinars
Treutment Updates from Health professionals
We produced five community webinars recorded with
health professionals. These have been watched by
more than1,400 people. We would like to thank the
volunteers who hosted these and asked the questions
posted by the community.
Sept 2023
update on Treatments for Adults
Jan 2024
Update on Zolgensma in the UK
Find thom on our YouTube channel:
vnmw.youtu.¢OMl@sP1nu1musCularAtrtsphYuK
Conver$ation$ with Health professionals
July 2023
Diet and Nutrition
Oct 2023,
Exercise and SMA
Oct 2023.
The Development of Cognition and
Communication Skills in SMA Type I
In 2024125 we plan to:
Continue to maintain our Patient Information Forum
ocoreditotion (PIF) for oll our heolth informotion,
Continue to develop our Living With SMA sectton of thè
website in response to community needs and
questions. This will include more informotion for young
people who are beginning to think about18aving
school ond moving forvoord into odult yeors.
We will further update our informotion sheets so that
they are in line with the information published for the
Notionol Screening Committee's In-service Evaluotion
lor newborn screening for SMA (ISE for NBS) when this
90es l ive.
FUNDRAISING
UPDATE
spinal
mtJ5cuI
•*.
sp
rnuu
Frazer's Fundraising Story
Frazer Lloyd and 30 of his friends and family, took on
the mission of completing the UK Three Peaks
Challenge in just 24 hours. The group managed to
climb Ben Nevis, Scaffell Pike & Snowdon in an
incredible 23 hours & 50 minut@s and were joined by
even more supporters for the fjinol climb.
Not only did they complete this mammoth Challenge
in an unbelievable time, they also held a fun day- with
bouncy costlès, ftscè Painting (Jnd gomes lor the kids,
followed by live music from a DJ, a raffle and an
ouction in the evening.
Raising Funds
We continued our digitol journey by lo.un¢hing o new
website in August 2023, implementing our new branding.
This allowèd us to offer the SMA community o bettèr usèr
experience when sourcing important information about
the condition, os well as o plotform to shore the
community voice and developments within the SMA
spoce.
SMA UK'S achievements are only made wssible beccjuse
of our g8n8rous donors and supporters. In order for us to
continue to meet the needs of all those Tiving with SMA we
need to ensure thot our fundraising income is sustainable
and consistent
Their mission wcjs to roise awareness of SMA, inspired
by Frazer and Leah's nine-month old son, Frank, who
has SMA Type l. Frank was born in January 2023 ond
received treatment ot AEder Hey Hospital, who
continue his care as an Outpatient following o long
stay in hospital.
Ir> 2023/24. thrIgh Vorious fundraising tirtives tsr
donations ourraised income was £1263,853.
Thank you to everyone who supported our viork in
2023124. We particularly would like to than
Frank's Grandma, ShaTOn, says, "He is an absolute
inspiration to us all. He defies all the odds that he's up
against and powers through. He is an amazing,
beautiful, lunny, little soul. Our little warrior and adored
by our whole group of friends and supportive family.,
We offered a range of fundraising activities to keep
supporters engaged, from chollenge events to coffee and
cake days, ond were successful with o large gront from
the Motability Foundation to fund our SMArt Moves
programme, We also had a successful year raising
Income from Trusts and Foundotions and through our
fundraising campaigns. At the end of January 2024,155
individuals were supporting us with o regular gift and wè
gratefully received four legacy gifts.
All our wonderful fundroisers ond donors
Our industry partners Novartis, Roche, Biogen & Pfizer
The charitable trusts and foundations, particularly of
note, Provinciol Grond Lodge of Worwickshire
The family are keen to continue roising awareness of
SMA with fL&ture events and will be making a donotson
to SMA UK from the funds they have raised so foT.
Thank you so much to you all for your amazing
supporti
The Motability Foundation for supporting our SMArt
Moves grant initiotive
The Big Give Challenge
11.p •
Ilh, I
spinal
muscular
atrophv
Thank you to everyone who donated to The Big Give
Christmas Chollenge; we reoched our target of £30,000.
Jyi
r todoy, hope loi
Christnias
Challenge
BlgGlve
Ride Scorpion
Porticipants in the 2023 Ride Scorpion event raised
over £26,000. Thrs is a fun cycling event in aid of SMA
UK, taking participants through the beautkful
Cotswolds countryside covering opproximotely 65
miles!
'I'll'
JIA
Trustee Gala Dinner
On 16th May 2023, SMA UK'S Trustees hosted"An
Evening with Sir Richard Dearlove OBE at the De Vere
Grand Connaught Rooms in London, raising £llO,000
for SMA UK.
11
Over180 guests listened to Sir Richard Dearlove, former
head of M16, discuss global issues. The event also
featured personal stories from SMA advocates,
including Portia Thorman and Toby MiFdon.
BBC Radi04 Chairty Appeal
We were seEected to take part in the BBC Radio 4
Appeal Broadcast in August 2023, during SMA
Awareness Month. Our appeal first uired on Sunday,
20th August and was available for worldwide listening.
The appeal raised £15,000 while significantly
increasing owareness.
Il'j u'lji.
Plans for 2024125
With the chorivs 40th annEversary approaching we w411
look at ways of maximisFng income and engagement with
the SMA community and our partners.
Matt ChoTley, a Times journalsst and broadcoster with
two cousins living with SMA and o long-term supporter
of SMA UK'S work, presented our appeal.
We will contFnue to highlight the importance regular gifts
make, as well as offering excitÈng chaIlenge events and
fundraising compaigns to our supporters.
DIGITAL
COMMUNICATIONS
UPDATE
SoGiol media update
The implèmentation of thè brand refresh through our
social media channels has boosted engagement
and reach. In the last year our Facebool Twitter and
Instagram followers increased by 20%.
In 2024125 we plun to"
In 2024125, we will look to increase followers across all
social media platforms as a means of engagement
and information sharing with the SMA community,
leveroging our growing online presence to create
meaningful connections ond drive collaboration
within the community.
SMA UK hasa face lift!
The needs of the SMA community are ever
changing and we felt thcst our website, which is our
main communication wtndow, needed to deliver
information clearly as well as being a plattorm
where the SMA community's voices con be seeri
and heard, centre stage.
As the decision was made to develop our website,
we felt it was also the Tight time to Incorporate a
brand refresh in line with the new site.
30.3K
Instogram
Reoch
It was important thotwe gave the brand a refresh
rather thon chan9e it completely and wonted o
destgn that represented the charity's mission as a
forward thinking, modern and agile one, that can
be trusted and recognised as the leod voice for all
people living with SMA and their families.
308K
Old Logo
Facebook
Reoch
spinal
muscular
atrophyuk
So thot we made sure we met the needs of the
SMA community within the website and branding,
Wé Crèatéd ts Wèbsitè Dèvelopment Committèè
consisting of a range of people living with SMA,
their families, supporters of the charity and staff.
The result is o brand and website that has
incorporated their valuable feedback and we ore
very grotetul for their input.
New Logo
Our TikTok chtsr)nèl, (Iounchéd in
February 2023) ended the year with
145 followers. This is a greot space to
share community videos and raise
awareness for SMA.
In August 2023 we launched the new website along
with our new strapline. Supporting, Informing and
Advocating which highlights the work we do
alongside the SMA community and are areas that
we continue to build on as a charity.
spinal
Muscular
Atrophyuk
SMA Matters and e-ngwsletters
li E-NEVdS
'OCTOBER
I PD23.
In April and September 2023, w8 sent out OUT
bi-ohnuol updute magozine, SMA Motters. This
publication, along with our monthly e-newsletter.
9erveg ag a vital plattorm for us to share the lutest an.d"
most significant news and infoimation about alj things
SMA wlth the cornmunity and their networks.
$MArt
Mov•s
Through these comfftunlcations, we strive to keep our
roaders Informed obout recent dev&lopments.
research odvoncements, and up¢oming events
related to The magazine featur.es in-depth
orticles, personal .stories, expert opintons ond various
r@sources to SUPPOrt those affected by SML Our goal
access to the knowledge and support they need.:
nv
TIrrvrkn idvrr-
3.889
3,736
SMA Matters
Subscribers
E-News
Subscribers
OYouTube
Find us on YouTube
@SpinalMuscularAtrophyUK
65+ years
2.70/.
45-54 years
10.00 /.
18-24 years
22.60/.
Our YouTube Channel
Our Audience
As shown in the chaTt to the right the majority of our
YouTube channel viewers are young adults, with the
largest segment being those aged 25-34. This is
followed by viewers aged 18-24, and then those in the
35-44 age group. The 45-54 age group also has a
notoble presence.
In the lost year, our YouTube channel subscribers grew
by 39% to 334. The channel is dedicated to supporting
and empowertng all those affected by SMA, featuring a
range ol content aimed ot raising uvoareness about
SMA, providing information on the condition, and
offering support to those impacted.
35-44 years
18.301.
It includes educotional videos explaining the causes,
symptoms, and treatment options lor SM4 as well as
personal stories and webinars that discuss living with
the condition and advancements in research and core.
Older demographics are less represented, with fewer
viewers aged 55-64 and even fewer 09ed 65 and
above. Notably, there are no viewers in the13-17 age
range.
25-34 years
41.70,
OPERATIONS
UPDATE
Our Enhanced Systems
Following on from last yeor's dat(Jbose upgrade to a
customer relatFonship platform we are now deployed
fully and reaping the benefits from the upgrade. We
also used the change as an opportunity to increase
the number of constituents we can work with on the
platform, helping SMA UK with more capacity and
retained working historical knowledge of our
community.
streamlining Operations and oftice Strategy
Our IT & Operations department have dived head-long
into brin9ing the automation of some of SMA UK'S
bctsic businèss processès into the 2020s. Our plun ig to
use the technological automation available to us
through Microsoft 365's off ice tools. This means that
new and established staff can all work to common
standards ot operation aeross business apps and
utilities. We've started with the automation of
processes such as expense claiming as well as the
harity's finonciol budgeting processes.
staff Team
As of April 2023- March 2024
Liz Ryburn
Information & Support Coordinator
Libby Roper
Communications & Support
Lucy De'L¢mos
Head of Fundraising & Communications
Yvonnewright
Fundraising Administrator
Rebecca Lewis
Fundraising Manager
stacey Shillingford
Trust FuTrdrakser
Giles Lomax
C.E.O
P•rtia Th•rmun
Advocacy Lead
Michele Phillips
Outreach and Support Coordinotor
Claire Holdcroft
Outreach Worker
After some due-diligence and cost analysis, the
decision was taken to double-down on our exksting
office space facilities for the foreseeable future. This
has given the planning of physical resources a green
light to cover the future needs of both office-based
and remote home-based staff. It hos also allowed for
timely renewals of some operationoa contracts with
suppfièrs offording us good èfficiencies Over
expenditure.
Jo Spi¢er
Outrea¢h Worker
Becci Howell
Outreach Worker
Bec Noy
Digital Communicotions Officer
Long-Term IT Infrastructure Strategy
Our strategy of IT-for-Staff is al so ear- marked to begin
this year. We plan to embark upon a multi-year
strategy to refresh technology used by staff across the
board, starting with replacement of our oldest units
where needs are jtjstified. The refresh cycle is expected
to take up to four years which will mean costs can be
kept low each year whilst still delivering on oreas of the
charity's infrastructure most in naed.
Nicola Beer
Outreach Worker
Finance Olficer
Ally Allen
Community Glants Officer
LuisCantoECastro
Community Serrfices Lead
Gary Edg¢¢omb*
Community Services Assistant
Martin Penning
Operations, Dotabose, Security
DrJomes Sleigh
Scientific Research Correspondent
Vanesstj ehristie-Brown
Research Coordinator
With special thanks to:
SMA
MUSCULAR
EUR
DYSTROPHY
OPE
UK
Our Trustees
Mark Dearlove, Chair of Trustees
Katharine Jackson, Treasurer
Prof. Kevin Talbot, Senior Advtsor to the Board
Casimir Knight
Deborah Woltier
Toby Mildon
Srin Modlpalli
Dr. Anne-marie Childs
Dr Ros Quinlivan
Lauren West
Dr. Alistair Emslie-smith (MBE)
Yvette Edwards
Michael Collins
Ross Hovey
Julian fiorentinl
Ben Morris
Tim She.ffield
TreatSMA
OURMUSCLES.
MArrER
GENETIC
ALLIANCE-
- Motablllty
Foundatlon
SMAREACHUK:
UK SMA Newborn
Screèning Alliance
ADLJLT
SMAREACN=_
i-l
01789 267 520
office@smauk.org.uk
smauk.org.uk
Spinal
Muscular
Atrophyuk
SMA UK
Address: Unit 9, Shottery 8rook Offsce Park, Timothy's Bridge Road,
stratford-upon-Avon, Warwiekshire, CV37 gNR
office@smauk.org.uk101789 267520
sma uk
RegTStered Chority Number1106815
Spinal Muscular Atrophy UK
splnal
Muscular
Atrophyulr
FINANCIAL REVIEW .
2023- 2024
## **TREASURERS REPORT**
Income for the year was £1,264k an increase of 3.7% on the prior year. This was driven primarily by a £239k grant from the Motability Foundation to provide a 3 year programme of wheelchair and mobility equipment support for people living with SMA. The charity also benefited from a large one off legacy and the National Lotteries Grant of £137k.
The total pharmaceutical funding received during the year was £161k the majority of which is restricted for SMA Care. Pharmaceutical funding was 13% of total income compared to 34% in the prior year.
Specific donation received in 2023/4 were Roche £110k, Novartis £31k, Biogen £15k, Pfizer £5k. We are committed to transparency on pharmaceutical funding and ensure that we do not accept funding from any party if we feel it will place the charity under undue pressure to act in a way that does not support or compromises our charitable objectives or independence.
SMA UK’s spending is broadly divided between information provision, support and research – our charitable purpose - and fundraising and administration. We aim to maximise spending on our core purpose and ensure that other costs are carefully monitored. This year, expenditure on fundraising has increased by £34k or 20% due largely to one off expenditure required to run a fundraising event which raised £103k and produced a profit of £81k.
Overall, there has been an increase in expenditure in the year of £80k or 9%. The proportion of SMA UK costs that were spent on its charitable purpose, our value or pence in the pound, was 68p with the majority of resources focused on the provision of support to the SMA community and research.
Our net income for 2023/24 was a surplus of £326k compared to £67k in the prior year. The majority of the 2023/4 surplus relates to restricted funds provided by Motability for the 3 year equipment programme, Pharmaceutical support for SMA Care and various community engagement projects. The surplus is therefore committed to services to be provided in 2024/5 and subsequent years. As a result, SMA UK has finished the year with a strong cash position of £965k, £387k of which is restricted. The charity is operating within its reserves policy and the board will continue to monitor activities and reserves very carefully.
**Katharine Jackson Treasurer**
**REPORT OF THE TRUSTEES** For the Year Ended 31 March 2024 ~~ae~~ **Future plans The trustees present their report with the financial statements of the charity for the** We will continue to: advocate for access to **year ended 31 March 2024.** the new drug treatments, representing the
We will continue to: advocate for access to the new drug treatments, representing the views of the SMA Community to regulatory authorities and pharmaceutical companies; monitor the roll out of NHS programmes and pharmaceutical initiatives supporting individuals seeking access. We will continue to provide and further develop our information, outreach and support services and opportunities for people in the SMA Community to connect with each other. Our fundraising efforts will need to achieve income levels that will enables us to achieve our goals. We will continue to adapt our working practices to ensure they are safe for both the SMA Community and our staff and trustees.
The trustees have adopted the provisions of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019).
## **OBJECTIVES AND ACTIVITIES**
**Objectives and aims** As stated in its Memorandum and Articles of Association, Spinal Muscular Atrophy Support UK is established for:
## **FINANCIAL REVIEW**
- The relief of people living with Spinal Muscular Atrophy and related medical conditions;
- The relief of persons who are in need after experiencing a bereavement or loss due to Spinal Muscular Atrophy; and
- The promotion of research into the causes and treatment of Spinal Muscular Atrophy.
## **Public benefit**
The Trustees confirm that they have referred to the guidance contained in the Charity Commission's General Guidance on Public Benefit when reviewing the Charity's aims and objectives and in planning future activities.
## **ACHIEVEMENT AND PERFORMANCE**
A detailed overview of the charity achievements and performance can be found in the Annual report 2024
**Financial position** See Treasurers Report from Katharine Jackson, Treasurer.
## **Investment policy**
No investments are currently held by the Charity.
The investment policy is reviewed annually.
## **Reserves policy**
**Restricted reserves** will always be applied in accordance with the Trust/donor's award specification. Where there is no specific budget, an element or general (core) overheads will be recovered against those reserves. The percentage recovery date is a matter of judgement; however, costs allocated will be reasonable, proportionate, justifiable and transparent.
**Unrestricted cash reserves** should be not less than three months of unrestricted expenditure, based on the most recent three-months of unrestricted expenditure.
## **STRUCTURE, GOVERNANCE AND MANAGEMENT**
## **Governing document**
The Charity is governed by its Memorandum and Articles of Association and constitutes a company limited by guarantee.
## **Appointment of Trustees**
Trustees are recruited as required to fill specific gaps and to complement the management experience of the Board of Trustees. Appointments are made in accordance with the Articles of Association, after the appointment has been approved by the resolution of Trustees.
## **Organisational structure**
All policy, strategy and financial decisions relating to the Charity have to be formally approved by the Board of Directors. The Board meets six times a year on a bi-monthly basis. Three of these meetings are held at the charity's offices in Stratford upon Avon, alternating with meetings held by telephone conferencing.
## **Risk management**
The Trustees have a duty to identify and review the risks to which the Charity is exposed and to ensure appropriate controls are in place to provide reasonable assurance against fraud and error.
## **Trustees**
T J D Sheffield (resigned 22.11.23) C S B Knight (resigned 22.11.23) Mrs D J Waltier (resigned 22.11.23) Dr R Quinlivan T J Mildon M T Dearlove Mrs K M Jackson M P Collins B M O Morris (resigned 22.11.23) Ms L E J West Dr A M E Smith Dr A M Childs Mrs K Y Edwards J M Fiorentini S Madipalli Miss C M Gray (resigned 3.10.23) Mrs T J B Burnley (appointed 22.11.23) B H Williams (appointed 22.11.23) Mrs M M Aspinall (appointed 22.11.23) Mrs J E Sheehan (appointed 22.11.23) R S Hovey (appointed 22.11.23)
## **Auditors**
Cooper Adams Ltd Chartered Accountants and Statutory Auditors 12 Payton Street Stratford upon Avon Warwickshire CV37 6UA
## **Patrons**
Professor V Dubowitz
The Trustees carried out regular reviews of the key risks affecting the Charity in the course of the year and took appropriate action.
## **REFERENCE AND ADMINISTRATIVE DETAILS**
## **Registered Charity number**
1106815
## **Principal address**
Unit 9 Shottery Brook Office Park Timothy's Bridge Road Stratford upon Avon Warwickshire CV37 9NR
## **TRUSTEES' RESPONSIBILITY STATEMENT**
The trustees are responsible for preparing the Report of the Trustees and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice) including Financial Reporting Standard 102 "The Financial Reporting Standard applicable in the UK and Republic of Ireland".
The law applicable to charities in England and Wales, the Charities Act 2011, Charity (Accounts and Reports) Regulations 2008 and the provisions of the trust deed requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources, including the income and expenditure, of the charity for that period. In preparing those financial statements, the trustees are required to
The trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the charity and to enable them to ensure that the financial statements comply with the Charities Act 2011, the Charity (Accounts and Reports) Regulations 2008 and the provisions of the trust deed. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.
Approved by order of the board of trustees on 14 June 2024 and signed on its behalf by:
M T Dearlove - Trustee
- Select suitable accounting policies and then apply them consistently;
- Observe the methods and principles in the Charity SORP;
- Make judgements and estimates that are reasonable and prudent;
- State whether applicable accounting standards have been followed, subject to any material departures disclosed and explained in the financial statements;
- Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in business.
**REPORT OF THE INDEPENDENT AUDITORS TO THE TRUSTEES OF SPINAL MUSCULAR ATROPHY UK** ~~>»~~ **Opinion Conclusions relating to going concern** We have audited the financial statements of In auditing the financial statements, we have Spinal Muscular Atrophy UK (the 'charity') for concluded that the trustees' use of the going the year ended 31 March 2024 which comprise concern basis of accounting in the the Statement of Financial Activities, the preparation of the financial statements is Statement of Financial Position, the Statement appropriate. of Cash Flows and notes to the financial Based on the work we have performed, we statements, including a summary of significant have not identified any material uncertainties accounting policies.
Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the charity's ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.
The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice), including Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland'.
Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.
- In our opinion the financial statements: Give a true and fair view of the state of the charity's affairs as at 31 March 2024 and of its incoming resources and application of resources, for the year then ended;
## **Other information**
The trustees are responsible for the other information. The other information comprises the information included in the Annual Report, other than the financial statements and our Report of the Independent Auditors thereon.
- Have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice, including Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland'; and
Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon.
- Have been prepared in accordance with the requirements of the Charities Act 2011.
In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether this gives rise to a material misstatement in the financial statements themselves. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact. We have nothing to report in this regard.
## **Basis for opinion**
applicable law. Our responsibilities under those standards are further described in the Auditors' responsibilities for the audit of the financial statements section of our report. We are independent of the charity in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC's Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.
## **Matters on which we are required to report by exception**
We have nothing to report in respect of the following matters where the Charities (Accounts and Reports) Regulations 2008 requires us to report to you if, in our opinion: The information given in the Report of the Trustees is inconsistent in any material respect with the financial statements; or
- Sufficient accounting records have not been kept; or
- The financial statements are not in agreement with the accounting records and returns; or
- We have not received all the information and explanations we require for our audit.
## **Responsibilities of trustees**
As explained more fully in the Trustees' Responsibilities Statement, the trustees are responsible for the preparation of the financial statements which give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.
In preparing the financial statements, the trustees are responsible for assessing the charity's ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the charity or to cease operations, or have no realistic alternative but to do so.
## **Our responsibilities for the audit of the financial statements**
We have been appointed as auditors under Section 144 of the Charities Act 2011 and report in accordance with the Act and relevant regulations made or having effect thereunder.
Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.
Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. Because of the inherent limitations of an audit, there is a risk that we will not detect all irregularities, including those leading to a material misstatement in the financial statements or non-compliance with regulation. This risk increases the more that compliance with a law or regulation is removed from the events and transactions reflected in the financial statements, as we will be less likely to become aware of instances of non-compliance. The risk is also greater regarding irregularities occurring due to fraud rather than error, as fraud involves intentional concealment, forgery, collusion, omission or misrepresentation.
A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council's website at www.frc.org.uk/auditorsresponsibilities. This description forms part of our Report of the Independent Auditors.
## **Use of our report**
This report is made solely to the charity's trustees, as a body, in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. Our audit work has been undertaken so that we might state to the charity's trustees those matters we are required to state to them in an auditors' report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charity and the charity's trustees as a body, for our audit work, for this report, or for the opinions
we have formed.
Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue a Report of the Independent Auditors that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists.
For and on behalf of Cooper Adams Ltd Chartered Accountants and Statutory Auditors 12 Payton Street Stratford upon Avon Warwickshire CV37 6UA
14 June 2024
**STATEMENT OF FINANCIAL ACTIVITIES** for the Year Ended 31 March 2024 ——
|ee
oe|ee
|Unrestricted
ee
|Restricted
eee
|2024
Total
eee
|2023
Total
ee
|
|---|---|---|---|---|---|
|**INCOME AND**
**ENDOWMENTS FROM**
ee
oe|Notes
ee
|funds
£
ee
|funds
£
eee
|funds
£
eee
|funds
£
ee
|
|Donations and
legacies
oe|2
|624,113
|629,526
|1,253,639
|918,342
|
|Other trading
activities
oetf|3
tf|3,755
tf|-
tf|3,755
tf|5,743
tf|
|Investment income
tf|4
tf|6,459
tf|-
tf|6,459
tf|588
tf|
|Total
===>|===>|634,327
===>|629,526
===>|1,263,853
===>|924,673
===>|
|**EXPENDITURE ON**
Raising funds
===>|5
===>|203,390
===>|-
===>|203,390
===>|169,411
===>|
|**Charitable activities**
Provision of support
===>|6
===>|261,941
===>|321,855
===>|583,796
===>|601,569
===>|
|Governance costs
===>|===>|92,671
===>|-
===>|92,671
===>|64,973
===>|
|Research related
activity
—————|—————|45,745
—————|12,258
—————|58,003
—————|21,570
—————|
|Total
—————|—————|603,747
—————|334,113
—————|937,860
—————|857,523
—————|
|NET INCOME
Tt|Tt|30,580
Tt|295,413
Tt|325,993
Tt|67,150
Tt|
|**RECONCILIATION OF**
**FUNDS**
Total funds brought
forward
Tt
Pp|Tt
|564,980
Tt
|91,334
Tt
|656,314
Tt
|589,164
Tt
|
|**TOTAL FUNDS**
**CARRIED FORWARD**
Ppot|ot|595,560
ot|386,747
ot|982,307
ot|656,314
ot|
**STATEMENT OF FINANCIAL POSITION** 31 March 2024 —— te
|31 March 2024
——|——|——|——|—— te|te|
|---|---|---|---|---|---|
|ee|Notes
ee|Unrestricted
Funds £
ee|Restricted
Funds £
ee|2024
Total Funds £
ee|2023
Total Funds £
ee|
|**FIXED ASSETS**
a||a||||
|Tangible Assets
a|11|8,762
a|-|8,762|7,037|
|**CURRENT ASSETS**
SS|SS|SS|SS|SS|SS|
|Stocks
SS|12
SS|5,628
SS|-
SS|5,628
SS|5,791
SS|
|Debtors
aa|13
aa|25,598
aa|-
aa|25,598
aa|36,117|
|Cash at bank and in
hand
a|a
ee|578,567
a
eeee|386,747
ee|965,314
ee|628,044
ee|
|Total||609,793|386,747|996,540|669,952|
|**CREDITORS**||||||
|Amounts falling due
within one year
a|14|(22,995)|-|(22,995)|(20,675)|
|**NET CURRENT ASSETS**
a
a||586,798|386,747|973,545|649,277|
|**TOTAL ASSETS LESS**
**CURRENT LIABILITIES**
a
a||595,560
|386,747
|982,307
|656,314
|
|**NET ASSETS**
SS|SS|595,560
SS|386,747
SS|982,307
SS|656,314
SS|
|**FUNDS**
SS|SS|SS|SS|SS|SS|
|Unrestricted funds:
General Fund
a||||595,560|564,980|
|Restricted funds:
Various Funds
a|ee|eeee|ee|386,747
ee|91,334
ee|
|TOTAL FUNDS
a|a|a|a|982,307
a|656,314
a|
The financial statements were approved by the Board of Trustees and authorised for issue on 14 June 2024 and were signed on its behalf by:
**M T Dearlove - Trustee**
**K M Jackson - Trustee**
2024 2023 Notes £ £ **Cash flows from operating activities** —— Cash generated from operations 1 336,003 38,646 Net cash provided by operating 336,003 38,646 activities **Cash flows from investing activities** or a Purchase of tangible fixed assets (5,192) (2,395) Interest received 6,459 588 Net cash provided by/(used in) 1,267 (1,807) investing activities —— **Change in cash and cash equivalents** 337,270 36,839 **in the reporting period Cash and cash equivalents at the** 628,044 591,205 **beginning of the reporting period** ———— **Cash and cash equivalents at the** 965,314 628,044 **end of the reporting period** eeee ee
|**NOTES TO THE STATEMENT**
**OF CASH FLOWS**
for the Year Ended 31 March 2024
ss|**NOTES TO THE STATEMENT**
**OF CASH FLOWS**
for the Year Ended 31 March 2024
ss|**NOTES TO THE STATEMENT**
**OF CASH FLOWS**
for the Year Ended 31 March 2024
ss|**NOTES TO THE STATEMENT**
**OF CASH FLOWS**
for the Year Ended 31 March 2024
ss|
|---|---|---|---|
|**1. RECONCILIATION OF NET INCOME TO NET CASH FLOW FROM OPERATING ACTIVITIES**||||
|||**2024**|**2023**|
|||**£**|**£**|
||**Net income for the reporting period**
**(as per the Statement of Financial Activities)**|325,993|67,150|
||**Adjustments for:**|||
||Depreciation charges|3,467|3,473|
||Interest received|(6,459)|(588)|
||Decrease in stocks|163|494|
||Decrease/(increase) in debtors|10,519|(20,878)|
||Increase/(decrease) in creditors|2,320|(11,005)|
||**Net cash provided by operations**|336,003|38,646|
## **2. ANALYSIS OF CHANGES IN NET FUNDS**
|**Net Cash**|**At 1.4.23**
**£**|**Cash flow**
**£**|**At 31.3.24**
**£**|
|---|---|---|---|
|Cash at bank and in hand|628,044|337,270|965,314|
|||||
|Total|628,044|337,270|965,314|
**NOTES TO THE FINANCIAL STATEMENTS** for the Year Ended 31 March 2024 ae **1. ACCOUNTING POLICIES**
## **Basis of preparing the financial statements**
The financial statements of the charity, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) 'Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019)', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' and the Charities Act 2011. The financial statements have been prepared under the historical cost convention.
**Tangible fixed assets** Depreciation is provided at the following annual rates in order to write off each asset over its estimated useful life.
Office equipment - 10 - 20% on cost Computer equipment - 25% straight line basis
## **Stocks**
Stocks are valued at the lower of cost and net realisable value, after making due allowance for obsolete and slow moving items.
## **Taxation**
The charity is exempt from tax on its charitable activities.
## **Income**
## **Fund accounting**
All income is recognised in the Statement of Financial Activities once the charity has entitlement to the funds, it is probable that the income will be received and the amount can be measured reliably.
Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees.
Restricted funds can only be used for particular purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular purposes.
## **Expenditure**
Liabilities are recognised as expenditure as soon Restrictions arise when specified by the donor or as there is a legal or constructive obligation when funds are raised for particular purposes. committing the charity to that expenditure, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly attributed to particular headings they have been allocated to activities on a basis consistent with the use of resources. **2. DONATIONS AND LEGACIES 2024 2023 £ £** Donations and gifts 717,901 759,199 Legacies 159,944 5,312 - Motability 238,500 The National Lottery Community Fund 137,294 153,831 **1,253,639 918,342** ——=5
## **3. OTHER TRADING ACTIVITIES**
|**3. OTHER TRADING ACTIVITIES**|||
|---|---|---|
||**2024**
**£**|**2023**
**£**|
|Merchandise Sales|3,755|5,743|
## **4. INVESTMENT INCOME**
**2024 2023 £ £** Bank Interest 6,459 588 **5. RAISING FUNDS 2024 2023 Raising Donations and Legacies £ £** Staff Costs 137,965 133,680 Fundraising and publicity 26,826 21,090 Events and promotions 33,953 12,304 Cost of merchandise sales 4,646 2,337 203,390 169,411 _—__ **6. CHARITABLE ACTIVITIES COSTS 2024 2023 Provision of Support £ £** Staff Costs and other expenses 337,154 373,414 Information and awareness raising 19,722 34,641 Shared experience network 13,783 24,045 Outreach service 77,482 48,285 Welfare and equipment grants 135,655 121,184 583,796 601,569 —= **2024 2023 Research Related Activity £ £** Staff costs and other expenses 42,412 18,093 - Medical research grants 6,729 Other research activities 8,862 3,477 58,003 21,570 ===
## **7. SUPPORT COSTS**
||**7. SUPPORT COSTS**|||||
|---|---|---|---|---|---|
|||||**Management £**||
||Governance costs||||92,671|
|||||||
|**2024**
**£**
**2023**
**£**
Staff costs and other expenses
75,039
51,285
Professional fees and bank charges
7,311
6,478
Other costs
10,321
7,210
92,671
64,973
===||||||
|**8. TRUSTEES’ REMUNERATION AND BENEFITS**||||||
|There were no trustees' remuneration or other benefits for the year ended 31 March 2024 nor for the year||||There were no trustees' remuneration or other benefits for the year ended 31 March 2024 nor for the year||
|ended 31 March 2023.||||||
## **Trustees' expenses**
|There were no trustees' expenses reimbursed for the year ended 31 March 2024 (2023: £nil).|
|---|
|Payments in respect of trustee indemnity insurance amounted to £438 (2023: £398).|
|**9. STAFF COSTS**|
|**2024**
**£**
**2023**
**£**
Wages and salaries
483,714
461,860
Social Security costs
41,460
43,784
Pension
21,884
20,476
547,058
526,120
—==|
|The average monthly number of employees during the year was as follows:|
|**2024**
**2023**
Management and administration
1
1
Direct charitable expenditure
12
10
Fundraising and publicity
5
5
18
16
===|
|We also engaged contractors in 2024 to assist us with our management and administration 1.2 FTE.|
No employees received emoluments in excess of £60,000 (2023: None)
## **10. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES**
||**INCOME AND ENDOWMENTS FROM**|**UNRESTRICTED**
**FUNDS £**|**RESTRICTED**
**FUNDS £**|**TOTAL**
**FUNDS £**|
|---|---|---|---|---|
||Donations and legacies|423,127|495,215|918,342|
||Other trading activities|5,743|-|5,743|
||Investment income|588|-|588|
||Total|429,458|495,215|924,673|
||**EXPENDITURE ON**||||
||Raising funds|169,411|-|169,411|
||**Charitable activities**||||
||Provision of support|157,878|443,691|601,569|
||Governance costs|64,973|-|64,973|
||Research related activity|20,686|884|21,570|
||Total|412,948|444,575|857,523|
||**NET INCOME**|16,510|50,640|67,150|
||**Transfers between funds**|(367)|367|-|
||**Net movement in funds**|16,143|51,007|67,150|
||**RECONCILIATION OF FUNDS**||||
||Total funds brought forward|548,837|40,327|589,164|
||**TOTAL FUNDS CARRIED FORWARD**|564,980|91,334|656,314|
|**11. TANGIBLE FIXED ASSETS**|||||
||**COST**|**Office**
**equipment £**|**Computer**
**equipment £**|**Totals**
**£**|
||At 1 April 2023|2,554|20,863|23,417|
||Additions|-|5,192|5,192|
||At 31 March 2024|2,554|26,055|28,609|
||**DEPRECIATION**||||
||At 1 April 2023|1,550|14,830|16,380|
||Charge for year|158|3,309|3,467|
||At 31 March 2024|1,708|18,139|19,847|
||**NET BOOK VALUE**||||
||At 31 March 2024|846|7,916|8,762|
||At 31 March 2023|1,004|6,033|7,037|
**12. STOCKS**
|**2024**
**£**
**2023**
**£**
Stocks held for re-sale
5,628
5,791
————|
|---|
|**13. DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR**|
|**2024**
**£**
**2023**
**£**
Prepayments and accrued income
25,598
36,117
—————|
|**14. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR**|
|**2024**
**£**
**2023**
**£**
Taxation and social security
16,273
14,555
Other creditors
6,722
6,120
22,995
20,675
———i|
|**15. LEASING AGREEMENTS**|
|Minimum lease payments under non-cancellable operating leases fall due as follows:|
|**2024**
**£**
**2023**
**£**
Within one year
15,000
20,094
Between one and five years
7,500
22,500
22,500
42,594
——|
|**16. MOVEMENT IN FUNDS**|
|**At 1.4.23**
**£**
**Net movement**
**in funds £**
**At 31.3.24**
**£**
**Unrestricted funds**
General fund
564,980
30,580
595,560
**Restricted funds**
Various funds
91,334
295,413
386,747
**TOTAL FUNDS**
656,314
325,993
982,307
==S55|
|**16. MOVEMENT IN FUNDS - CONTINUED**|
|---|
|Net movement in funds, included in the above are as follows:|
|**Incoming**
**resources £**
**Resources**
**expended £**
**Movement in**
**funds £**
**Unrestricted funds**
General fund
634,327
(603,747)
30,580
**Restricted funds**
Various funds
629,526
(334,113)
295,413
**TOTAL FUNDS**
1,263,853
(937,860)
325,993
__|
|**Comparatives for movement in funds**|
|**At 1.4.22**
**£**
**Net movement**
**in funds £**
**Transfers**
**between funds £**
**At 31.3.23**
**£**
**Unrestricted funds**
General fund
548,837
16,510
(367)
564,980
**Restricted funds**
Various funds
40,327
50,640
367
91,334
**TOTAL FUNDS**
589,164
67,150
-
656,314
__|
|**Comparative net movement in funds, included in the above are as follows:**|
|**Incoming**
**resources £**
**Resources**
**expended £**
**Movement in**
**funds £**
**Unrestricted funds**
General fund
429,458
(412,948)
16,510
**Restricted funds**
Various funds
495,215
(444,575)
50,640
**TOTAL FUNDS**
924,673
(857,523)
67,150
__|
## **16. MOVEMENT IN FUNDS - CONTINUED**
A current year 12 months and prior year 12 months combined position is as follows:
|**At 1.4.22**
**£**
**Net movement**
**in funds £**
**Transfers**
**between funds £**
**At 31.3.23**
**£**
**Unrestricted funds**
General fund
548,837
47,090
(367)
595,560
**Restricted funds**
Various funds
40,327
346,053
367
386,747
**TOTAL FUNDS**
589,164
393,143
-
982,307
__|
|---|
|A current year 12 months and prior year 12 months combined net movement in funds, included in the above|
|are as follows:|
|**Incoming**
**resources £**
**Resources**
**expended £**
**Movement in**
**funds £**
**Unrestricted funds**
General fund
1,063,785
(1,016,695)
47,090
**Restricted funds**
Various funds
1,124,741
(778,688)
346,053
**TOTAL FUNDS**
2,188,526
(1,795,383)
393,143
___|
## **16. MOVEMENT IN FUNDS - CONTINUED Statement of funds**
|**16. MOVEMENT IN FUNDS - CONTINUED**
**Statement of funds**|||||
|---|---|---|---|---|
||**Balance b/f at**
**1.4.23**
**£**|**Incoming**
**resources**
**£**|**Resources**
**expended**
**£**|**Movement in**
**funds**
**£**|
|**Unrestricted funds**|||||
|General fund|564,980|634,326|(603,746)|595,560|
|**Restricted funds**|||||
|Toy Packs|500|1,675|(2,175)|-|
|Community Information Webinars|-|5,000|-|5,000|
|Motability|-|238,500|(110,639)|127,861|
|SMA Care UK Grant|-|67,354|-|67,354|
|Community Engagement|-|47,350|-|47,350|
|UK SMA Newborn Screening Alliance|5,398|15,974|(21,373)|-|
|SMA Horizons Project|763|(560)|(203)|-|
|Working with the SMA Community|68,399|137,294|(144,189)|61,504|
|Website & Digital Comms Development|6,274|-|(6,274)|-|
|Support Services|-|40,950|(38,930)|2,020|
|PhD Scholarship Yr2|10,000|-|(6,730)|3,270|
|SMA and Me Books|-|15,000|(3,600)|11,400|
|Know No Bounds|-|30,255|-|30,255|
|Content and Web Development|-|30,733|-|30,733|
|**Total Restricted Funds**|**91,334**|**629,526**|**(334,113)**|**386,747**|
|**TOTAL FUNDS**
oe|**656,314**
oe|**1,263,852**
oe|**(937,859)**
oe|**982,307**
oe|
## **Community Engagement**
## **16. MOVEMENT IN FUNDS - CONTINUED**
—=
SMA UK received grants from trusts and pharma to support our community engagement events which included Picnics in the park and our Children's and adults resonate weekends.
## **UK SMA Newborn Screening Alliance**
## **Toy Packs**
Our multi-sensory toy packs are available free of charge to families in the UK for newly diagnosed children.They include items that provide visual, tactile and auditory stimulation. They have been designed to offer entertainment during the day, fun at bath time and comfort at bedtime. They are suitable for infants aged up to 12 months of age.
## **Community Information Webinars**
We ask expert health, education and social care professionals questions on topics of interest and concern to the SMA Community such as on treatments, diet and exercise. These popular webinars hosted by a community member provide easy access to important up-to-date and accurate information.
The Alliance brings together clinicians, patient groups and other stakeholders, determined to achieve the earliest possible introduction of newborn screening for SMA in the UK and in so doing deliver the best outcomes from treatment and reduce future healthcare costs. This fund supports the costs of the Project Manager, the secretariat (SMA UK and MDUK) and communications.
## **SMA Horizons Project**
The SMArt Horizon project has the goal to identify new innovation, 'out of the box' therapies for people living with SMA, especially for the chronic population. These therapies may be complementary to the existing ones that target the SMN upregulation.
## **Working with the SMA Community**
This Fund goes towards the costs of our information, outreach and support , community development and advocacy services.
## **Motability**
SMA UK were awarded a 3 year grant from The Motability Foundation, giving us the opportunity to assist people living with SMA in purchasing mobility equipment and wheelchairs through our SMArt Moves grant.
## **SMA Care UK Grant**
The SMA Care UK project will bring together members of the SMA community and a range of health care and other professions to update the guidance outlined in Standards of Care (2018) and ensure it is relevant and meaningful to those living with SMA in the UK today. Funding has been received and requested from trusts and industry.
**Website & Digital Comms Development**
This year this fund was set up to enable the launch of a new website and branding refresh targeted for August 2023. It also increased our Communications staffing capacity, our communications reach and supported the further development of community virtual networks.
## **Support Services**
This fund targeted any Support Services costs that were not covered by any of the other restricted funds that support this work.
## **16. MOVEMENT IN FUNDS - CONTINUED**
## **PhD Scholarship Yr2**
This supports our commitment to fund the 4- year research programme that aims to further understand the motor enlargement process in people who have SMA and how this might be addressed and improve treatment outcomes. It runs from 2022-2025, and is funded jointly with Muscular Dystrophy UK.
## **Content and Web Development**
As part of our on going website and communications development, were we awarded a grant to strengthen and facilitate Community engagement through our multimedia platforms whilst improving imagery including videos on the SMA UK website.
## **SMA and Me Books**
The books 'SMA and me' were published in 2016 before disease modifying treatments changed the landscape of SMA. With input from children living with SMA, their families and their clinicians, this new resource sponsored by Biogen, will help children to understand what SMA is, how the treatments work and, importantly, why we now see so many individual differences within the SMA community.
## **Know No Bounds**
Two members of the SMA Community have set them self a challenge to climb Snowdonia to fundraise for SMA UK to purchase specialise off road wheelchairs therefore aiming to give more opportunities for people living with SMA to explore the great outdoors.
## **17. RELATED PARTY DISCLOSURES**
There were no related party transactions for the year ended 31 March 2024.
## **18. CHARITY STRUCTURE**
On 4th August 2022 the charity changed from a 'company limited by guarantee' to a 'charitable incorporated organization'.
|**DETAILED STATEMENT OF**
**FINANCIAL ACTIVITIES**
for the Year Ended 31 March 2024—|—|—|
|---|---|---|
||**2024**
**£**|**2023**
**£**|
|**INCOME AND ENDOWMENTS**|||
|**Donations and legacies**|||
|Donations and gifts|717,901|759,199|
|Legacies|159,944|5,312|
|Motability|238,500|-|
|The National Lottery Community Fund|137,294|153,831|
||**1,253,639**|**918,342**|
|**Other trading activities**|||
|Merchandise sales|3,755|5,743|
|**Investment income**|||
|Bank interest|6,459|588|
|**Total incoming resources**|**1,263,853**|**924,673**|
|**EXPENDITURE**|||
|**Raising donations and legacies**|||
|Staff costs and other expenses|137,965|133,680|
|Fundraising and publicity|26,826|21,090|
|Events and promotions|33,953|12,304|
|Cost of merchandise sales|4,646|2,337|
||**203,390**|**169,411**|
|**Charitable activities**|||
|Staff costs and other expenses|379,565|391,507|
|Medical research grants|6,730|378|
|Other research activities|8,862|3,099|
|Information and awareness raising|19,722|34,641|
|Shared experiences network|13,783|24,045|
|Outreach service|77,482|48,285|
|Welfare, equipment grants and toy packs|135,655|121,184|
||641,799|623,139|
||**2024**
**£**|**2023**
**£**|
|---|---|---|
|**Support costs**|||
|**Management**|||
|Staff costs and other expenses|75,039|51,285|
|Professional fees and bank charges|6,642|6,478|
|Other costs|10,990|7,210|
||**92,671**|**64,973**|
|Total resources expended|937,860|857,523|
|**Net income**|325,993|67,150|
Address: Unit 9, Shottery Brook Office Park. Timothy’s Bridge Road, Stratford-Upon-Avon, Warwickshire, CV37 9NR Office@smauk.org.uk | 01789 267520 Registered Charity Number 1106815
splnal
Muscular
Atrophyulr
FINANCIAL REVIEW .
2023- 2024
## **TREASURERS REPORT**
Income for the year was £1,264k an increase of 3.7% on the prior year. This was driven primarily by a £239k grant from the Motability Foundation to provide a 3 year programme of wheelchair and mobility equipment support for people living with SMA. The charity also benefited from a large one off legacy and the National Lotteries Grant of £137k.
The total pharmaceutical funding received during the year was £161k the majority of which is restricted for SMA Care. Pharmaceutical funding was 13% of total income compared to 34% in the prior year.
Specific donation received in 2023/4 were Roche £110k, Novartis £31k, Biogen £15k, Pfizer £5k. We are committed to transparency on pharmaceutical funding and ensure that we do not accept funding from any party if we feel it will place the charity under undue pressure to act in a way that does not support or compromises our charitable objectives or independence.
SMA UK’s spending is broadly divided between information provision, support and research – our charitable purpose - and fundraising and administration. We aim to maximise spending on our core purpose and ensure that other costs are carefully monitored. This year, expenditure on fundraising has increased by £34k or 20% due largely to one off expenditure required to run a fundraising event which raised £103k and produced a profit of £81k.
Overall, there has been an increase in expenditure in the year of £80k or 9%. The proportion of SMA UK costs that were spent on its charitable purpose, our value or pence in the pound, was 68p with the majority of resources focused on the provision of support to the SMA community and research.
Our net income for 2023/24 was a surplus of £326k compared to £67k in the prior year. The majority of the 2023/4 surplus relates to restricted funds provided by Motability for the 3 year equipment programme, Pharmaceutical support for SMA Care and various community engagement projects. The surplus is therefore committed to services to be provided in 2024/5 and subsequent years. As a result, SMA UK has finished the year with a strong cash position of £965k, £387k of which is restricted. The charity is operating within its reserves policy and the board will continue to monitor activities and reserves very carefully.
**Katharine Jackson Treasurer**
**REPORT OF THE TRUSTEES** For the Year Ended 31 March 2024 ~~ae~~ **Future plans The trustees present their report with the financial statements of the charity for the** We will continue to: advocate for access to **year ended 31 March 2024.** the new drug treatments, representing the
We will continue to: advocate for access to the new drug treatments, representing the views of the SMA Community to regulatory authorities and pharmaceutical companies; monitor the roll out of NHS programmes and pharmaceutical initiatives supporting individuals seeking access. We will continue to provide and further develop our information, outreach and support services and opportunities for people in the SMA Community to connect with each other. Our fundraising efforts will need to achieve income levels that will enables us to achieve our goals. We will continue to adapt our working practices to ensure they are safe for both the SMA Community and our staff and trustees.
The trustees have adopted the provisions of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019).
## **OBJECTIVES AND ACTIVITIES**
**Objectives and aims** As stated in its Memorandum and Articles of Association, Spinal Muscular Atrophy Support UK is established for:
## **FINANCIAL REVIEW**
- The relief of people living with Spinal Muscular Atrophy and related medical conditions;
- The relief of persons who are in need after experiencing a bereavement or loss due to Spinal Muscular Atrophy; and
- The promotion of research into the causes and treatment of Spinal Muscular Atrophy.
## **Public benefit**
The Trustees confirm that they have referred to the guidance contained in the Charity Commission's General Guidance on Public Benefit when reviewing the Charity's aims and objectives and in planning future activities.
## **ACHIEVEMENT AND PERFORMANCE**
A detailed overview of the charity achievements and performance can be found in the Annual report 2024
**Financial position** See Treasurers Report from Katharine Jackson, Treasurer.
## **Investment policy**
No investments are currently held by the Charity.
The investment policy is reviewed annually.
## **Reserves policy**
**Restricted reserves** will always be applied in accordance with the Trust/donor's award specification. Where there is no specific budget, an element or general (core) overheads will be recovered against those reserves. The percentage recovery date is a matter of judgement; however, costs allocated will be reasonable, proportionate, justifiable and transparent.
**Unrestricted cash reserves** should be not less than three months of unrestricted expenditure, based on the most recent three-months of unrestricted expenditure.
## **STRUCTURE, GOVERNANCE AND MANAGEMENT**
## **Governing document**
The Charity is governed by its Memorandum and Articles of Association and constitutes a company limited by guarantee.
## **Appointment of Trustees**
Trustees are recruited as required to fill specific gaps and to complement the management experience of the Board of Trustees. Appointments are made in accordance with the Articles of Association, after the appointment has been approved by the resolution of Trustees.
## **Organisational structure**
All policy, strategy and financial decisions relating to the Charity have to be formally approved by the Board of Directors. The Board meets six times a year on a bi-monthly basis. Three of these meetings are held at the charity's offices in Stratford upon Avon, alternating with meetings held by telephone conferencing.
## **Risk management**
The Trustees have a duty to identify and review the risks to which the Charity is exposed and to ensure appropriate controls are in place to provide reasonable assurance against fraud and error.
## **Trustees**
T J D Sheffield (resigned 22.11.23) C S B Knight (resigned 22.11.23) Mrs D J Waltier (resigned 22.11.23) Dr R Quinlivan T J Mildon M T Dearlove Mrs K M Jackson M P Collins B M O Morris (resigned 22.11.23) Ms L E J West Dr A M E Smith Dr A M Childs Mrs K Y Edwards J M Fiorentini S Madipalli Miss C M Gray (resigned 3.10.23) Mrs T J B Burnley (appointed 22.11.23) B H Williams (appointed 22.11.23) Mrs M M Aspinall (appointed 22.11.23) Mrs J E Sheehan (appointed 22.11.23) R S Hovey (appointed 22.11.23)
## **Auditors**
Cooper Adams Ltd Chartered Accountants and Statutory Auditors 12 Payton Street Stratford upon Avon Warwickshire CV37 6UA
## **Patrons**
Professor V Dubowitz
The Trustees carried out regular reviews of the key risks affecting the Charity in the course of the year and took appropriate action.
## **REFERENCE AND ADMINISTRATIVE DETAILS**
## **Registered Charity number**
1106815
## **Principal address**
Unit 9 Shottery Brook Office Park Timothy's Bridge Road Stratford upon Avon Warwickshire CV37 9NR
## **TRUSTEES' RESPONSIBILITY STATEMENT**
The trustees are responsible for preparing the Report of the Trustees and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice) including Financial Reporting Standard 102 "The Financial Reporting Standard applicable in the UK and Republic of Ireland".
The law applicable to charities in England and Wales, the Charities Act 2011, Charity (Accounts and Reports) Regulations 2008 and the provisions of the trust deed requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources, including the income and expenditure, of the charity for that period. In preparing those financial statements, the trustees are required to
The trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the charity and to enable them to ensure that the financial statements comply with the Charities Act 2011, the Charity (Accounts and Reports) Regulations 2008 and the provisions of the trust deed. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.
Approved by order of the board of trustees on 14 June 2024 and signed on its behalf by:
M T Dearlove - Trustee
- Select suitable accounting policies and then apply them consistently;
- Observe the methods and principles in the Charity SORP;
- Make judgements and estimates that are reasonable and prudent;
- State whether applicable accounting standards have been followed, subject to any material departures disclosed and explained in the financial statements;
- Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in business.
**REPORT OF THE INDEPENDENT AUDITORS TO THE TRUSTEES OF SPINAL MUSCULAR ATROPHY UK** ~~>»~~ **Opinion Conclusions relating to going concern** We have audited the financial statements of In auditing the financial statements, we have Spinal Muscular Atrophy UK (the 'charity') for concluded that the trustees' use of the going the year ended 31 March 2024 which comprise concern basis of accounting in the the Statement of Financial Activities, the preparation of the financial statements is Statement of Financial Position, the Statement appropriate. of Cash Flows and notes to the financial Based on the work we have performed, we statements, including a summary of significant have not identified any material uncertainties accounting policies.
Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the charity's ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.
The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice), including Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland'.
Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.
- In our opinion the financial statements: Give a true and fair view of the state of the charity's affairs as at 31 March 2024 and of its incoming resources and application of resources, for the year then ended;
## **Other information**
The trustees are responsible for the other information. The other information comprises the information included in the Annual Report, other than the financial statements and our Report of the Independent Auditors thereon.
- Have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice, including Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland'; and
Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon.
- Have been prepared in accordance with the requirements of the Charities Act 2011.
In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether this gives rise to a material misstatement in the financial statements themselves. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact. We have nothing to report in this regard.
## **Basis for opinion**
applicable law. Our responsibilities under those standards are further described in the Auditors' responsibilities for the audit of the financial statements section of our report. We are independent of the charity in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC's Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.
## **Matters on which we are required to report by exception**
We have nothing to report in respect of the following matters where the Charities (Accounts and Reports) Regulations 2008 requires us to report to you if, in our opinion: The information given in the Report of the Trustees is inconsistent in any material respect with the financial statements; or
- Sufficient accounting records have not been kept; or
- The financial statements are not in agreement with the accounting records and returns; or
- We have not received all the information and explanations we require for our audit.
## **Responsibilities of trustees**
As explained more fully in the Trustees' Responsibilities Statement, the trustees are responsible for the preparation of the financial statements which give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.
In preparing the financial statements, the trustees are responsible for assessing the charity's ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the charity or to cease operations, or have no realistic alternative but to do so.
## **Our responsibilities for the audit of the financial statements**
We have been appointed as auditors under Section 144 of the Charities Act 2011 and report in accordance with the Act and relevant regulations made or having effect thereunder.
Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.
Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. Because of the inherent limitations of an audit, there is a risk that we will not detect all irregularities, including those leading to a material misstatement in the financial statements or non-compliance with regulation. This risk increases the more that compliance with a law or regulation is removed from the events and transactions reflected in the financial statements, as we will be less likely to become aware of instances of non-compliance. The risk is also greater regarding irregularities occurring due to fraud rather than error, as fraud involves intentional concealment, forgery, collusion, omission or misrepresentation.
A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council's website at www.frc.org.uk/auditorsresponsibilities. This description forms part of our Report of the Independent Auditors.
## **Use of our report**
This report is made solely to the charity's trustees, as a body, in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. Our audit work has been undertaken so that we might state to the charity's trustees those matters we are required to state to them in an auditors' report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charity and the charity's trustees as a body, for our audit work, for this report, or for the opinions
we have formed.
Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue a Report of the Independent Auditors that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists.
For and on behalf of Cooper Adams Ltd Chartered Accountants and Statutory Auditors 12 Payton Street Stratford upon Avon Warwickshire CV37 6UA
14 June 2024
**STATEMENT OF FINANCIAL ACTIVITIES** for the Year Ended 31 March 2024 ——
|ee
oe|ee
|Unrestricted
ee
|Restricted
eee
|2024
Total
eee
|2023
Total
ee
|
|---|---|---|---|---|---|
|**INCOME AND**
**ENDOWMENTS FROM**
ee
oe|Notes
ee
|funds
£
ee
|funds
£
eee
|funds
£
eee
|funds
£
ee
|
|Donations and
legacies
oe|2
|624,113
|629,526
|1,253,639
|918,342
|
|Other trading
activities
oetf|3
tf|3,755
tf|-
tf|3,755
tf|5,743
tf|
|Investment income
tf|4
tf|6,459
tf|-
tf|6,459
tf|588
tf|
|Total
===>|===>|634,327
===>|629,526
===>|1,263,853
===>|924,673
===>|
|**EXPENDITURE ON**
Raising funds
===>|5
===>|203,390
===>|-
===>|203,390
===>|169,411
===>|
|**Charitable activities**
Provision of support
===>|6
===>|261,941
===>|321,855
===>|583,796
===>|601,569
===>|
|Governance costs
===>|===>|92,671
===>|-
===>|92,671
===>|64,973
===>|
|Research related
activity
—————|—————|45,745
—————|12,258
—————|58,003
—————|21,570
—————|
|Total
—————|—————|603,747
—————|334,113
—————|937,860
—————|857,523
—————|
|NET INCOME
Tt|Tt|30,580
Tt|295,413
Tt|325,993
Tt|67,150
Tt|
|**RECONCILIATION OF**
**FUNDS**
Total funds brought
forward
Tt
Pp|Tt
|564,980
Tt
|91,334
Tt
|656,314
Tt
|589,164
Tt
|
|**TOTAL FUNDS**
**CARRIED FORWARD**
Ppot|ot|595,560
ot|386,747
ot|982,307
ot|656,314
ot|
**STATEMENT OF FINANCIAL POSITION** 31 March 2024 —— te
|31 March 2024
——|——|——|——|—— te|te|
|---|---|---|---|---|---|
|ee|Notes
ee|Unrestricted
Funds £
ee|Restricted
Funds £
ee|2024
Total Funds £
ee|2023
Total Funds £
ee|
|**FIXED ASSETS**
a||a||||
|Tangible Assets
a|11|8,762
a|-|8,762|7,037|
|**CURRENT ASSETS**
SS|SS|SS|SS|SS|SS|
|Stocks
SS|12
SS|5,628
SS|-
SS|5,628
SS|5,791
SS|
|Debtors
aa|13
aa|25,598
aa|-
aa|25,598
aa|36,117|
|Cash at bank and in
hand
a|a
ee|578,567
a
eeee|386,747
ee|965,314
ee|628,044
ee|
|Total||609,793|386,747|996,540|669,952|
|**CREDITORS**||||||
|Amounts falling due
within one year
a|14|(22,995)|-|(22,995)|(20,675)|
|**NET CURRENT ASSETS**
a
a||586,798|386,747|973,545|649,277|
|**TOTAL ASSETS LESS**
**CURRENT LIABILITIES**
a
a||595,560
|386,747
|982,307
|656,314
|
|**NET ASSETS**
SS|SS|595,560
SS|386,747
SS|982,307
SS|656,314
SS|
|**FUNDS**
SS|SS|SS|SS|SS|SS|
|Unrestricted funds:
General Fund
a||||595,560|564,980|
|Restricted funds:
Various Funds
a|ee|eeee|ee|386,747
ee|91,334
ee|
|TOTAL FUNDS
a|a|a|a|982,307
a|656,314
a|
The financial statements were approved by the Board of Trustees and authorised for issue on 14 June 2024 and were signed on its behalf by:
**M T Dearlove - Trustee**
**K M Jackson - Trustee**
2024 2023 Notes £ £ **Cash flows from operating activities** —— Cash generated from operations 1 336,003 38,646 Net cash provided by operating 336,003 38,646 activities **Cash flows from investing activities** or a Purchase of tangible fixed assets (5,192) (2,395) Interest received 6,459 588 Net cash provided by/(used in) 1,267 (1,807) investing activities —— **Change in cash and cash equivalents** 337,270 36,839 **in the reporting period Cash and cash equivalents at the** 628,044 591,205 **beginning of the reporting period** ———— **Cash and cash equivalents at the** 965,314 628,044 **end of the reporting period** eeee ee
|**NOTES TO THE STATEMENT**
**OF CASH FLOWS**
for the Year Ended 31 March 2024
ss|**NOTES TO THE STATEMENT**
**OF CASH FLOWS**
for the Year Ended 31 March 2024
ss|**NOTES TO THE STATEMENT**
**OF CASH FLOWS**
for the Year Ended 31 March 2024
ss|**NOTES TO THE STATEMENT**
**OF CASH FLOWS**
for the Year Ended 31 March 2024
ss|
|---|---|---|---|
|**1. RECONCILIATION OF NET INCOME TO NET CASH FLOW FROM OPERATING ACTIVITIES**||||
|||**2024**|**2023**|
|||**£**|**£**|
||**Net income for the reporting period**
**(as per the Statement of Financial Activities)**|325,993|67,150|
||**Adjustments for:**|||
||Depreciation charges|3,467|3,473|
||Interest received|(6,459)|(588)|
||Decrease in stocks|163|494|
||Decrease/(increase) in debtors|10,519|(20,878)|
||Increase/(decrease) in creditors|2,320|(11,005)|
||**Net cash provided by operations**|336,003|38,646|
## **2. ANALYSIS OF CHANGES IN NET FUNDS**
|**Net Cash**|**At 1.4.23**
**£**|**Cash flow**
**£**|**At 31.3.24**
**£**|
|---|---|---|---|
|Cash at bank and in hand|628,044|337,270|965,314|
|||||
|Total|628,044|337,270|965,314|
**NOTES TO THE FINANCIAL STATEMENTS** for the Year Ended 31 March 2024 ae **1. ACCOUNTING POLICIES**
## **Basis of preparing the financial statements**
The financial statements of the charity, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) 'Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019)', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' and the Charities Act 2011. The financial statements have been prepared under the historical cost convention.
**Tangible fixed assets** Depreciation is provided at the following annual rates in order to write off each asset over its estimated useful life.
Office equipment - 10 - 20% on cost Computer equipment - 25% straight line basis
## **Stocks**
Stocks are valued at the lower of cost and net realisable value, after making due allowance for obsolete and slow moving items.
## **Taxation**
The charity is exempt from tax on its charitable activities.
## **Income**
## **Fund accounting**
All income is recognised in the Statement of Financial Activities once the charity has entitlement to the funds, it is probable that the income will be received and the amount can be measured reliably.
Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees.
Restricted funds can only be used for particular purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular purposes.
## **Expenditure**
Liabilities are recognised as expenditure as soon Restrictions arise when specified by the donor or as there is a legal or constructive obligation when funds are raised for particular purposes. committing the charity to that expenditure, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly attributed to particular headings they have been allocated to activities on a basis consistent with the use of resources. **2. DONATIONS AND LEGACIES 2024 2023 £ £** Donations and gifts 717,901 759,199 Legacies 159,944 5,312 - Motability 238,500 The National Lottery Community Fund 137,294 153,831 **1,253,639 918,342** ——=5
## **3. OTHER TRADING ACTIVITIES**
|**3. OTHER TRADING ACTIVITIES**|||
|---|---|---|
||**2024**
**£**|**2023**
**£**|
|Merchandise Sales|3,755|5,743|
## **4. INVESTMENT INCOME**
**2024 2023 £ £** Bank Interest 6,459 588 **5. RAISING FUNDS 2024 2023 Raising Donations and Legacies £ £** Staff Costs 137,965 133,680 Fundraising and publicity 26,826 21,090 Events and promotions 33,953 12,304 Cost of merchandise sales 4,646 2,337 203,390 169,411 _—__ **6. CHARITABLE ACTIVITIES COSTS 2024 2023 Provision of Support £ £** Staff Costs and other expenses 337,154 373,414 Information and awareness raising 19,722 34,641 Shared experience network 13,783 24,045 Outreach service 77,482 48,285 Welfare and equipment grants 135,655 121,184 583,796 601,569 —= **2024 2023 Research Related Activity £ £** Staff costs and other expenses 42,412 18,093 - Medical research grants 6,729 Other research activities 8,862 3,477 58,003 21,570 ===
## **7. SUPPORT COSTS**
||**7. SUPPORT COSTS**|||||
|---|---|---|---|---|---|
|||||**Management £**||
||Governance costs||||92,671|
|||||||
|**2024**
**£**
**2023**
**£**
Staff costs and other expenses
75,039
51,285
Professional fees and bank charges
7,311
6,478
Other costs
10,321
7,210
92,671
64,973
===||||||
|**8. TRUSTEES’ REMUNERATION AND BENEFITS**||||||
|There were no trustees' remuneration or other benefits for the year ended 31 March 2024 nor for the year||||There were no trustees' remuneration or other benefits for the year ended 31 March 2024 nor for the year||
|ended 31 March 2023.||||||
## **Trustees' expenses**
|There were no trustees' expenses reimbursed for the year ended 31 March 2024 (2023: £nil).|
|---|
|Payments in respect of trustee indemnity insurance amounted to £438 (2023: £398).|
|**9. STAFF COSTS**|
|**2024**
**£**
**2023**
**£**
Wages and salaries
483,714
461,860
Social Security costs
41,460
43,784
Pension
21,884
20,476
547,058
526,120
—==|
|The average monthly number of employees during the year was as follows:|
|**2024**
**2023**
Management and administration
1
1
Direct charitable expenditure
12
10
Fundraising and publicity
5
5
18
16
===|
|We also engaged contractors in 2024 to assist us with our management and administration 1.2 FTE.|
No employees received emoluments in excess of £60,000 (2023: None)
## **10. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES**
||**INCOME AND ENDOWMENTS FROM**|**UNRESTRICTED**
**FUNDS £**|**RESTRICTED**
**FUNDS £**|**TOTAL**
**FUNDS £**|
|---|---|---|---|---|
||Donations and legacies|423,127|495,215|918,342|
||Other trading activities|5,743|-|5,743|
||Investment income|588|-|588|
||Total|429,458|495,215|924,673|
||**EXPENDITURE ON**||||
||Raising funds|169,411|-|169,411|
||**Charitable activities**||||
||Provision of support|157,878|443,691|601,569|
||Governance costs|64,973|-|64,973|
||Research related activity|20,686|884|21,570|
||Total|412,948|444,575|857,523|
||**NET INCOME**|16,510|50,640|67,150|
||**Transfers between funds**|(367)|367|-|
||**Net movement in funds**|16,143|51,007|67,150|
||**RECONCILIATION OF FUNDS**||||
||Total funds brought forward|548,837|40,327|589,164|
||**TOTAL FUNDS CARRIED FORWARD**|564,980|91,334|656,314|
|**11. TANGIBLE FIXED ASSETS**|||||
||**COST**|**Office**
**equipment £**|**Computer**
**equipment £**|**Totals**
**£**|
||At 1 April 2023|2,554|20,863|23,417|
||Additions|-|5,192|5,192|
||At 31 March 2024|2,554|26,055|28,609|
||**DEPRECIATION**||||
||At 1 April 2023|1,550|14,830|16,380|
||Charge for year|158|3,309|3,467|
||At 31 March 2024|1,708|18,139|19,847|
||**NET BOOK VALUE**||||
||At 31 March 2024|846|7,916|8,762|
||At 31 March 2023|1,004|6,033|7,037|
**12. STOCKS**
|**2024**
**£**
**2023**
**£**
Stocks held for re-sale
5,628
5,791
————|
|---|
|**13. DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR**|
|**2024**
**£**
**2023**
**£**
Prepayments and accrued income
25,598
36,117
—————|
|**14. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR**|
|**2024**
**£**
**2023**
**£**
Taxation and social security
16,273
14,555
Other creditors
6,722
6,120
22,995
20,675
———i|
|**15. LEASING AGREEMENTS**|
|Minimum lease payments under non-cancellable operating leases fall due as follows:|
|**2024**
**£**
**2023**
**£**
Within one year
15,000
20,094
Between one and five years
7,500
22,500
22,500
42,594
——|
|**16. MOVEMENT IN FUNDS**|
|**At 1.4.23**
**£**
**Net movement**
**in funds £**
**At 31.3.24**
**£**
**Unrestricted funds**
General fund
564,980
30,580
595,560
**Restricted funds**
Various funds
91,334
295,413
386,747
**TOTAL FUNDS**
656,314
325,993
982,307
==S55|
|**16. MOVEMENT IN FUNDS - CONTINUED**|
|---|
|Net movement in funds, included in the above are as follows:|
|**Incoming**
**resources £**
**Resources**
**expended £**
**Movement in**
**funds £**
**Unrestricted funds**
General fund
634,327
(603,747)
30,580
**Restricted funds**
Various funds
629,526
(334,113)
295,413
**TOTAL FUNDS**
1,263,853
(937,860)
325,993
__|
|**Comparatives for movement in funds**|
|**At 1.4.22**
**£**
**Net movement**
**in funds £**
**Transfers**
**between funds £**
**At 31.3.23**
**£**
**Unrestricted funds**
General fund
548,837
16,510
(367)
564,980
**Restricted funds**
Various funds
40,327
50,640
367
91,334
**TOTAL FUNDS**
589,164
67,150
-
656,314
__|
|**Comparative net movement in funds, included in the above are as follows:**|
|**Incoming**
**resources £**
**Resources**
**expended £**
**Movement in**
**funds £**
**Unrestricted funds**
General fund
429,458
(412,948)
16,510
**Restricted funds**
Various funds
495,215
(444,575)
50,640
**TOTAL FUNDS**
924,673
(857,523)
67,150
__|
## **16. MOVEMENT IN FUNDS - CONTINUED**
A current year 12 months and prior year 12 months combined position is as follows:
|**At 1.4.22**
**£**
**Net movement**
**in funds £**
**Transfers**
**between funds £**
**At 31.3.23**
**£**
**Unrestricted funds**
General fund
548,837
47,090
(367)
595,560
**Restricted funds**
Various funds
40,327
346,053
367
386,747
**TOTAL FUNDS**
589,164
393,143
-
982,307
__|
|---|
|A current year 12 months and prior year 12 months combined net movement in funds, included in the above|
|are as follows:|
|**Incoming**
**resources £**
**Resources**
**expended £**
**Movement in**
**funds £**
**Unrestricted funds**
General fund
1,063,785
(1,016,695)
47,090
**Restricted funds**
Various funds
1,124,741
(778,688)
346,053
**TOTAL FUNDS**
2,188,526
(1,795,383)
393,143
___|
## **16. MOVEMENT IN FUNDS - CONTINUED Statement of funds**
|**16. MOVEMENT IN FUNDS - CONTINUED**
**Statement of funds**|||||
|---|---|---|---|---|
||**Balance b/f at**
**1.4.23**
**£**|**Incoming**
**resources**
**£**|**Resources**
**expended**
**£**|**Movement in**
**funds**
**£**|
|**Unrestricted funds**|||||
|General fund|564,980|634,326|(603,746)|595,560|
|**Restricted funds**|||||
|Toy Packs|500|1,675|(2,175)|-|
|Community Information Webinars|-|5,000|-|5,000|
|Motability|-|238,500|(110,639)|127,861|
|SMA Care UK Grant|-|67,354|-|67,354|
|Community Engagement|-|47,350|-|47,350|
|UK SMA Newborn Screening Alliance|5,398|15,974|(21,373)|-|
|SMA Horizons Project|763|(560)|(203)|-|
|Working with the SMA Community|68,399|137,294|(144,189)|61,504|
|Website & Digital Comms Development|6,274|-|(6,274)|-|
|Support Services|-|40,950|(38,930)|2,020|
|PhD Scholarship Yr2|10,000|-|(6,730)|3,270|
|SMA and Me Books|-|15,000|(3,600)|11,400|
|Know No Bounds|-|30,255|-|30,255|
|Content and Web Development|-|30,733|-|30,733|
|**Total Restricted Funds**|**91,334**|**629,526**|**(334,113)**|**386,747**|
|**TOTAL FUNDS**
oe|**656,314**
oe|**1,263,852**
oe|**(937,859)**
oe|**982,307**
oe|
## **Community Engagement**
## **16. MOVEMENT IN FUNDS - CONTINUED**
—=
SMA UK received grants from trusts and pharma to support our community engagement events which included Picnics in the park and our Children's and adults resonate weekends.
## **UK SMA Newborn Screening Alliance**
## **Toy Packs**
Our multi-sensory toy packs are available free of charge to families in the UK for newly diagnosed children.They include items that provide visual, tactile and auditory stimulation. They have been designed to offer entertainment during the day, fun at bath time and comfort at bedtime. They are suitable for infants aged up to 12 months of age.
## **Community Information Webinars**
We ask expert health, education and social care professionals questions on topics of interest and concern to the SMA Community such as on treatments, diet and exercise. These popular webinars hosted by a community member provide easy access to important up-to-date and accurate information.
The Alliance brings together clinicians, patient groups and other stakeholders, determined to achieve the earliest possible introduction of newborn screening for SMA in the UK and in so doing deliver the best outcomes from treatment and reduce future healthcare costs. This fund supports the costs of the Project Manager, the secretariat (SMA UK and MDUK) and communications.
## **SMA Horizons Project**
The SMArt Horizon project has the goal to identify new innovation, 'out of the box' therapies for people living with SMA, especially for the chronic population. These therapies may be complementary to the existing ones that target the SMN upregulation.
## **Working with the SMA Community**
This Fund goes towards the costs of our information, outreach and support , community development and advocacy services.
## **Motability**
SMA UK were awarded a 3 year grant from The Motability Foundation, giving us the opportunity to assist people living with SMA in purchasing mobility equipment and wheelchairs through our SMArt Moves grant.
## **SMA Care UK Grant**
The SMA Care UK project will bring together members of the SMA community and a range of health care and other professions to update the guidance outlined in Standards of Care (2018) and ensure it is relevant and meaningful to those living with SMA in the UK today. Funding has been received and requested from trusts and industry.
**Website & Digital Comms Development**
This year this fund was set up to enable the launch of a new website and branding refresh targeted for August 2023. It also increased our Communications staffing capacity, our communications reach and supported the further development of community virtual networks.
## **Support Services**
This fund targeted any Support Services costs that were not covered by any of the other restricted funds that support this work.
## **16. MOVEMENT IN FUNDS - CONTINUED**
## **PhD Scholarship Yr2**
This supports our commitment to fund the 4- year research programme that aims to further understand the motor enlargement process in people who have SMA and how this might be addressed and improve treatment outcomes. It runs from 2022-2025, and is funded jointly with Muscular Dystrophy UK.
## **Content and Web Development**
As part of our on going website and communications development, were we awarded a grant to strengthen and facilitate Community engagement through our multimedia platforms whilst improving imagery including videos on the SMA UK website.
## **SMA and Me Books**
The books 'SMA and me' were published in 2016 before disease modifying treatments changed the landscape of SMA. With input from children living with SMA, their families and their clinicians, this new resource sponsored by Biogen, will help children to understand what SMA is, how the treatments work and, importantly, why we now see so many individual differences within the SMA community.
## **Know No Bounds**
Two members of the SMA Community have set them self a challenge to climb Snowdonia to fundraise for SMA UK to purchase specialise off road wheelchairs therefore aiming to give more opportunities for people living with SMA to explore the great outdoors.
## **17. RELATED PARTY DISCLOSURES**
There were no related party transactions for the year ended 31 March 2024.
## **18. CHARITY STRUCTURE**
On 4th August 2022 the charity changed from a 'company limited by guarantee' to a 'charitable incorporated organization'.
|**DETAILED STATEMENT OF**
**FINANCIAL ACTIVITIES**
for the Year Ended 31 March 2024—|—|—|
|---|---|---|
||**2024**
**£**|**2023**
**£**|
|**INCOME AND ENDOWMENTS**|||
|**Donations and legacies**|||
|Donations and gifts|717,901|759,199|
|Legacies|159,944|5,312|
|Motability|238,500|-|
|The National Lottery Community Fund|137,294|153,831|
||**1,253,639**|**918,342**|
|**Other trading activities**|||
|Merchandise sales|3,755|5,743|
|**Investment income**|||
|Bank interest|6,459|588|
|**Total incoming resources**|**1,263,853**|**924,673**|
|**EXPENDITURE**|||
|**Raising donations and legacies**|||
|Staff costs and other expenses|137,965|133,680|
|Fundraising and publicity|26,826|21,090|
|Events and promotions|33,953|12,304|
|Cost of merchandise sales|4,646|2,337|
||**203,390**|**169,411**|
|**Charitable activities**|||
|Staff costs and other expenses|379,565|391,507|
|Medical research grants|6,730|378|
|Other research activities|8,862|3,099|
|Information and awareness raising|19,722|34,641|
|Shared experiences network|13,783|24,045|
|Outreach service|77,482|48,285|
|Welfare, equipment grants and toy packs|135,655|121,184|
||641,799|623,139|
||**2024**
**£**|**2023**
**£**|
|---|---|---|
|**Support costs**|||
|**Management**|||
|Staff costs and other expenses|75,039|51,285|
|Professional fees and bank charges|6,642|6,478|
|Other costs|10,990|7,210|
||**92,671**|**64,973**|
|Total resources expended|937,860|857,523|
|**Net income**|325,993|67,150|
Address: Unit 9, Shottery Brook Office Park. Timothy’s Bridge Road, Stratford-Upon-Avon, Warwickshire, CV37 9NR Office@smauk.org.uk | 01789 267520 Registered Charity Number 1106815