Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F CHARrrY REGISTRATION NUMBER: 1128289 Dravet Syndrome UK Financial Statements 31 January 2021 MCABA Limrted Va Mitchells Cttartered accountants 91-97 Saltergale Chesterfield Derbyshire S40 1LA
Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Flnancial Stat•m•nts Year Ended 31 January 2021 Pag•• Tru8tee8' annual report 1to15 lrK1eFdenl audito¢s report to tho members 16to19 Statement of financial aclivrtk8s (irt1n9 Inco and expenditure account} Stslement of flnanclal posltion 21 Notsg to the financial staternents 22to31
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trust8•8' Annual Report Year Ended 31 January 2021 The Iruslees present their report and the financial ststements of the Charity for the year ended 31 January 2021. Rof•r•nco and admlnl8tratlv• dots118 Reglsterod charlty nam• Dravet Syndrome UK Charlty fegtltratlon number 1128289 Prln¢lp41 offl¢ PO Box 756 Chesterfield Detbyshire S43 9EB Th• trustM8 K Hughes G Wlson-John JDRLloyd N Wlliamson (Appjinted 1 September 20201 Audllor MCABA Limited Ua Mitchells Chartered Ac¢ountsnts & Statutory Auditor 91-97 Saltergale Chesterfield Derbyshire S40 1LA Slructur•, gov•m•nce and mang•m•nt Gov•rnlng Docum•nt Dravel Syndrome UK 1$ ¢urrentty conslrtuted under the original Declaration of Trust dated 31 January 2009 and supplemental deed dated 18th Juty 2018 Dravet Syndroff UK is registe as a charity with the Charity Commission Tru•t•ei Selectlon Methods The appointment of Iruslees is govemed by the Declaration of Tnjsl. Trustees must act in the best interests of the charity al all times. Future Iruslees musl be appointed for terffts of office of four years by resolution of the Iruslees and be re-appointed al Ihe end of the lemi of office. All trustees musl be over 18 and there musl be a minimum of 2 and a maximum of 6 truslees. Under the trust deed a Iruslee may be appointed or removed by resolution of the trustees.
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustses, Annual Report (COnlln¢KdJ Year Ended 31 January 2021 Oblectlve8 and actlvltl The objeelive and main activities of the chanty are expressed In the Trust Deed and are the -general purposes of such charitable bodies or for such other purpose as shall be exclusively charitable as the Iruslee$ may from time to bme decide" The trustees must apply the income of the charity in furthering the following objects I'the objects"). To fvnd medical research projects inlo Dravet Syndroffe and other related genet sodium channel epilepsies that will benefft the sufferers of Oravet Syndroffe., To raise awareness and provide educab.on to families and the community about Dravel Syndrome, To support famili&s affected by Dravel Syndrome in the UK Publ1¢ Bfjn•fit The Irusl8es confirm that they have complied wrth Ihe requirements of Section 17 of the Charities Act 2011, having due regard lo the public benefit guidance pulshe&bY Ihe Charity ComMissn for England and Wales.
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustees. Annual Report (contlnu•dJ Year Ended 31 January 2021 A¢hlevemtnts and perfoanCe In 2020121 Dravel Syndrome UK {OSUKI, ak*ng with other UK Charit$. faced an unprecedented Challenge with the onset of the coronavirus pandemic. The need for support for families living with Dravet Syndrome increased significantly, at the same tsme as our capacity to fundraise was severely restricted by social distancing measures. We are proud lo reFort that DSUK the coronavirus chalbenge. remaining open al all times without recourse lo furlough, and increasing family support lo rreet additional needs arising trom the pandemic. ilsl we saw a 370A drop in community fvndraising. we weie able lo meet this challenge thanks to exceptional COVID-19 funding from the Nalional Lottery Community Fund. Pears FoundalionlDCMS. our corporate sponsor and olhef industy partners. We also benefited from growth in giving via Facebook and a generous individual donation of £25.000. During this reporting period. the Board of Trustees developed and signed off DSUK'S first 5-year strategy. with implementation from 1st February 2021 This ambitious strategy aims lo reach mo families living with Dravel Syndrome. delNer research that puts famity needs first, improve awareness and under$tsnding of the condition amongst professionals. particularty in adult neurology and social seNi¢es, and lo give families the tools and support needed lo assert their nghls. Alongside the above we continued delivering estsblished actNilies for the benefit of families living with Dravel Syndrome, as defined in our charitsble objects and in keeping the following areas.. 1. Support 2. Edu¢alion 3. Research Below the Trustees report on the charity's aclivilies, outputs and oul¢offes against each of these thematic areas. They also report on DSUK'S Income. expenditu, reseNes and futu plans. Support In 2020121 DSUK directly supported nearty SOO families living with Dravel Syndrome in the UK, with 41 new families registering with DSUK compared to 26 families registered in 2019120 This support Included the following 1. Coronavirus resource hub 2. Seizure monitor fund 3. 16+ assistanee fund 4. Bereavement fund 5. 1..1 emolionaVpracti¢al support 6. Center Parcs grant 7. Super siblings award Coronavirus Resource Hub In response lo the coronavirus pandemic we undertook a wide range of new activrties lo meet the pressing needs ol families through this crisis. This included." the re-allocation of 40.kn of our Family Support Manager's lime lo providing 1.1 eMotnal and praet&g1 support lo families living with Dravet Syndrome, the eslablishmenl of a COVID-19 resource hub with a Q&A Informed by DSUK'S medical advisory board, the launch of a webinar series on the riCal implications of COVID-19 and COVID-19 vaccines on people living with Dravet Syndrome. the commissioning of a film tilled -LTving with Dravet Syndrome in COVID-19 lockdown" watched 1300 times at the lime of wrrting this rewrt, the launch of a COVID-19 family survey whi¢h was accepted for publallOn In the Neurolcgica Scandinavica, $¢xial actrvities with a virtual quvz and more be$eS
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F
Dravet Syndrome UK
Trust••s' Annual Report {ctsitlnu6dJ
Year Ended 31 January 2021
Achiovements and performance ictsoiinu•dJ
Seizure Monitor Fund
47 seizure monitors awarded with 43 families benefiting.
Seizure monitors are vital to alam families to seizures $0 effergency treatment can be given quickly
enough. Unfortunately, these mnilors are not routinely frjnded by health or social care. DSUK offers a
non-means tested seizure mnilor fund. aiming to reduce the risk of brain damage and death and
improve the quality of lile and life chan¢es for people wrth Dravet Syndrome.
In this reporting period DSUK awarded 47 setzure nItOrS, a si9nthcant increase on the 32 seizure
monrtors In the previous year. These awafds Included..
0 11 Pulse Oximeler Machines
0 10 MedPage Epileptic Seizure M11015
0 13 Baby Pixel Monitors
0 13 Fingertip Pulse Oximelefs
During this PortIng period we were extremety gralefvl lo receive a £10k grant from the DM Thomas
Foundation for Young People for 14 Pulse Oximelers. which DSUK purchased In the Teporting period.
We were also pleased lo start offering families an additional monitor. called the Nighlwalch, lo choose
from following extensive parenvcarer leslin9. The Nighlwalch monitor consists ofa comfortable wireles5
armband that closely monitors heart rale and mots.on while the wearer is lying In bed en Nighlwalch
detects a potentially severe seizure. a waming is transmitted to a caregiver via a wireless signal from
the arm module lo the correspondin9 base station alerting the parent or caref.
As in previous years famity feedback was overwhelmingty posib've and includes the following quotes".
'W8 recently r8guested if il was possible lo gel 8 pulse oximeter for our daughter who h8s Dr8vel
Syndrome. We have just re¢eivad 8 pulse oximel&r(w6 ¢8nnot il was so quickj. We are honastly
losl for words and cannot Ih8nk you and the ch8nty enough for your support in supplying this piece of
vital equipment. This amazing piec8 of equipment will m8k8 8 huge diff8rence to h8lping monitor
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F
Dravet Syndrome UK
Trustses. Annual R6POrt (conllnu8dJ
Year Ended 31 January 2021
Achlevernents and perfomiance (conllnuo
In this reporting penod DSUK made 31 awards, a Signrfant increase on the 13 awards made in the
previous year. This increased demand was in large part driven by increased need arising from COVI
19, as people applied for IT and mobility equipment to ¢ompensate for the loss of nomial daily aclivilies.
With thanks to £5k of grant fvnding from the Pears FoundationlDCMS we were able to meet part of this
increased demand. with ftjnding awarded for young people aged 16 10 25 years living in England. Overall
16+ grants were awarded as follows.
0 8 x IT equipment le.g. iPadsl
0 8 x Indoor lurnituie le.g. suitsble Chairs)
0 4 x Mobility equipment
0 3 x Home cooling systems
0 2 x Garden items le g. sensory garden)
06xOlher
In this reporting per we've had a snnI aftUnt of posib've feedback including the following."
'Il was v8ry 8xcrfing to r8c8we the K)nderful sensory equipment for
Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F
Dravet Syndrome UK
Trustees. Annual Report (continued)
Year Ended 31 January 2021
Aehlevemonts and perfornian¢e (wllnu¢dJ
As an outcome 71 families were supported on 161 separate occasions with 670A of these F)oints of
contact being logged as COVID-19 felaled. Of all Ihe points of contact the lop six reasons for seeking
DSUK support were. 18Vo stress and anxiety, 9% soc4 isolabon and loneliness. 4Vo lack of support
from social care. 3Yo COVID-19 symptom5. 3Yo seEures and 3% schoolleducation issues. The Famity
Support Manager was available to provide emotional SUPFK)rt and practical assistance. which included
writing letters of support le.g. lo assist with challenges accessing social carel and signposting.
The 1.. 1 emotional and practKal support provided during this ts.me has ten incredibly impacrful. 8elow
are quotes from parents to illustrate the difference this support meant to them..
'you have made me feel so much betterf
'Thank you so much it's goc*Y to know you and the team are all there for us"
Center Parcs Grant
Each year DSUK holds a weekend away at Cenler Parcs in Nottinghamshire bringing Oravel families
together to share experienceslknowledge and also to have a much-needed holiday. In arranging this
holiday DSUK airns lo reduce the s¢xial Isolats"on and loneliness experienced by many families living
with Dravet Syndrome, by connecling them with a new supp)rt neOrk of Dravel families.
th great sadness it was necessary to postpone the Center Parcs weekend planned for June 2020 due
to the COVID-19 pandemic. Families were understanding and measures were put in place to transfer
the booking5 already rnade to a future dale. Thi5 wa5 originally planned for June 2021 but at the time
of wnling this report had been fvrther postponed to June 2022.
Super Sibling Award
18 Super Sibling Awards awarded and 18 people benefitted.
Siblings of those diagnosed with Dravet Syndrome experience a wide range of pressures, plans
cancelled, holidays not wssible, sleepovefs being loo intense and rr¥)re besides. Parents often speak
about the Many. amazing lrttle things that these brothers and sisters do for everyone in the family.
Unfortunately, the demands of everyday life rnean siblings rarely gel the recognition they deserve.
DSUK'S annual sUr Sibling award is for these young. unsung her ofthe Dravetfamily.
In December 2020 DSUK received 18 Super Sibling Award nominations from parentslcarers. Every
sibling was reeognised with a pefsonalised certfficale. trophy and £40 amazon gift voucher so they could
treat themselves lo something special. In making these awards DSUK aims lo contribute positively to
sibling mental well-being. by iecognising their achievements as a SuFer Sibling.
"
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustee3' Annual Report (contsnuedj Year Ended 31 January 2021 Achievements and perfornlance (c¢Ilnu8dJ Closed Facebook Group 372 people tenefitted from being members of our closed Facet4Jok Group Every DSUK registered family is invited to join our closed Facebcrt)k Group. This group is a safe moderated space for families to ask questions. share experiences and access support from other Dravel families. In managing this group DSUK aims lo improve knowledge and understanding of Dravel Syndrome as well as ieducing feelings of social Isolation and loneliness. In 2020121 DSUK saw the numter of members grow from 349 10 372 peop. On average the group has 4 10 5 new posts a day covering a wide range of topics Including discussion on". setture types. sevzure medication, other therapies le.g. physiol. benefits and social care. EHCPS and $pecial schools, residential caie options and mre besides. The group also provides a safe space for families lo Sha the highs and lows ol ¢aring for someone with Dfavel, enabling people lo access peer support. Education During 2021121. DSUK contributed lo improving awareness and undelandIng of Dravel Syndrom8 through the following educational aclivilies. Marketing and Communications Strategy This year saw a $tep4hange in DSUK'S approach In March 2021, Claire Eldred was appointed as Head of Marketing and Communi¢alions with a remit to expand the reach of DSUK'S communications to key audiences, InclLbding families living wilh Dravet Syndrome, medical professionals and th8 broader community of supporters and sponsors. With this appoinlmenl. we identified some key educational priorities around which lo focus our communications effort during 202012021. These Included.. The impact of COVIO-19 - with infomiation and guidance for families and healthcare professionals via our website, social media plarfoms and webinars We also undertook the only UK survey lo examine the understand the risks, impact and outcome of COVID-19 in people affected by Oravet Syndiome, which is now published in the peer-revthv journal, Acta Neurologi Standinava New and emerging treatments for Dravel Syndrome including SLbbmitting leslimonies and participating in meetings with NHS appraisal committees for the use of cannabidiol in Seolland and fenfluramine in England and Wales. The genetics of Dravel Syndrome we identified some Information gaps around genetics in our educational materials, and also some common misconcepts.ons {e g. a lack of awareness that Dravel Syndrome is a clinical rather than genetic diagnosis). and addre5$ed these via our website. social media and a webinar dedicated to this topic. Continuing lo impfove diagnosis- although improving. especialty among children. there is still much to achieve in terrr of improving diagnosis and Irealment outcomes. Consistently throughout 202012021. we raised awareness on signs of Dravet Syndrome. the importance of earty diagnosis and t)enefit5 of genetsc lesting al any age. In addition lo implementing these educatsonal priorrties. we developed a comprehensive 5-year marketing and communications plan. with ath"¥ib"es aligned to DSUK'S overall strategy.
Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustees, Annual Report (confrnwdj Year Ended 31 January 2021 Achlevements and perfomian¢e {¢tsntinu•dJ Educational campaigns Internatnal or national awareness dayshveeks offer DSUK opportunities to communicate educational priorities. especially with regard to impioving diagnosis of Dravet Syndrome. During 202012021. we leveraged three events in paiticular lo drNe awareness campaigns". Rare Diseases Day (February) - 'Paige's Story.. DSUK'S short film about a family living with Dravet Syndrome was shortlisled for the People's Vote award for the Rare Diseases Film Fesb'val. Although 'Paige's Story. did not win top pnze. our sccial media campaign encouraging people to vole and share the video was very successful, reaching more than 111.250 people with messages about Dravel Syndrome. National Epilepsy Awareness Week {Mayl the theme in 2020 was #morethanseizures DSUK shared facts about Dravet Syndrome throughout the week that reached nearly 29.000 people, helping lo educate the epilepsy ¢ommunty. as well as broader audiences, atoul signs of Dravel Syndrome. International Oravel Syndrome Awareness Day {June) our key educab'onal campaign for 202012021 involved a series of activities tsking place on this global day dedicated to Dravel Syndrome. Our #DravelTogelher video. highlighting DSUK'S support for families during the pandemic, was watched over 640 times on YouTube, reached more Ihan 14.500 people on social media. Our 'Five Facts, post reached 58,741 and overall on sccial media we reached just under 1CNJ.000 people wtth educational messages about Dravel Syndrome. Webinars Five educational webinars were held benefitting nearly 2.0(Ki parentslcarers who attended or watched recorded version on our YouTube channel Dravel Syndrome in the COVID-19 pandemic {April 20201 with Professor Helen Cross Dravel Syndrome & Family Wellness during COVID-19 (April 20201 with Neil Wlliamson Dravel Syndrome during COVID-19 - Focus on Adults (April 20201 with Professor Sanjay Sisodiya and Fiona Scolding QC Understanding the Genetics of Dravet Syndrome {Septemt*r 20201 with Dr Andreas Brunklaus COVID-19 and Dravet Syndrome.. Latest upjales induding Vaccines (January 20211 wrth Professor Helen Cross and Professor Sanjay Sisodiya Leaflets and Video Projects In 2021 we initiated major educatKsnal initiabves.. Updating DSUK'S educabonal kaflels including the Family Guide and HCP Diagnosis Ge lo bring these up to dale with the latest knowledge about Dravel Syndrome. With the Family Guide in particular, this involved significantly extending the seope of the original leaflet (created In 20131. The leaflets are currently in draft form with plans to launch in the latter part of 2021 Planning for a series of educational videos to educate and engage audiences in different aspects of living with Dravet Syndrome, including short films to raise awareness le.g. around Intemalional Dravet Syndrome Awareness Dayl. case Studies featuring children and adults with Dravet Syndrome and talking heads videos with our Medical Advisory Board.
Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustees. Annual Report (continued) Year Ended 31 January 2021 Achlevements and performan¢t f¢ontsnv¢d) Website In 2020-2021. more than 22,500 people visited our website and benefited from its educational content. 87Yo of these were new visitors lo the website. Ovetall. the most viewed pages lin addition to the home pagel were 'Whal is Dravet Syndrome, 15.000+ views). 'Aboul Dravet Syndrome., 14.000+ views). 'Dravel Journeys'l4.000+ view51 and 'COWD-19 Advice and Guidance. 13.500+ view51. Key updates during this perKJd included.. COVID-19 hub containing advKe and guKlance about COVID-19. famity wellness during the pandemic and infomialion about grants and other support servi¢es provKled by DSUK during the pandemic13500+ viewsl A 'Genetics of Dravet Syndrome. online resou (870+ views) An expansion to the 'Sibling5' secb.on of the website wilh additional ad¥e and case studies 1285 views) Updates and new case studies added lo the'Dravet Joumeys. secb'on. shanng real-life experiences from families living with Dravel Syndrome14000+ views) Social media Social media is an important plaffoffn for raising awareness and understanding of Dravet Syndrome. DSUK has an active Sal media presence. posbng on platfom$ behveen 3-5 times per week on a variety of topics including our educational priOrits, famity case StUdS, fundraising stories and other news relevant lo the Dravet Syndrome communty. During 2020-2021, DSUK'S posts across our four social media platforms {Facebtsok. Instagram. Twitter and Linkedlnl had a combined overall reach of nearty one fflillion and a gain of more than 1.000 new followers since January 2020. Our mosl impaclful posts during 2020-2021 corresponded to otjr educational priorities. with posts on COVID-19 guidance. treatments advances. the genetics of Dravet Syndrome and improving diagnosis gamering the greatest reach and engagement across largel aud nces. Welcome packs 41 families benefited from receiving DSUK welcome pa¢ks. Every Dravel family that registers with DSUK receives a wekome pack contsining educational leaflets, including our 68 page"Family Gue to Dravet Syndrome" This book eontains medical informabon on seizures, as well as the Cr)rtsid condrtions that many Dravet pab.ents face. It also contains Infomialion on schooling, respite and many other Issues faced by families who are caring for someone diagnosed with the condition including transitn to adullhocxy. In 2020121 we sent out 41 free welcome packs lo UK parentslcafers with a confirmed diagnosis of Dravet Syndrome.
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustees. Annual Report (continued) Year Ended 31 January 2021 Achlevements •nd performance fconlinu•d) External conferences 2 major conlefences attended, reaching paediatncians, neurologists and specialist nurses. Every year DSUK attends the major UK and inlemational paedialnc. neurology and epilepsy conferences to raise awareness and improve understanding of Dravel Syndrome among51 paedialricians. neurologists and specialist nurses Due lo the coronavirus pandemic. many congresses that DSUK would usually attend were cancelled or changed to a virtual event. The tsvo major congresses we attended were the virtual AES (Amefican Epilepsy Society) meeting in December 2020 and the virtual BPNA IBrilish Paediatnc Neufobgy AssocialnI meeting in January 2021. AES- The conference featured 60 studies relevant to Dravel Syndrome. We attended and reviewed the most relevant scientific sessions and presentations, updating our key educational messages accordingly. BPNA- As well as attending key S¢At sessions. DSUK hosted a virtual stand with educabonal messages around the diagnosis of Dravel Syndrome and we Interacted with 213 clinicians. Our Chair of Trustees. Galla Wlson-John presented al a symposium alon9side our Medical Advisory Board member5. Professor Helen Cross and Dr Andreas Bnjnklaus. We also look part in a meeting with 15 other charities lo discuss key issues in chiklhood neurology and making sure the patient voice is heard. In addition, we live-tsveeled from the event and published a wrap-up blog post on oui website, reaching just under 10,000 people with educational messages from the ¢onferen¢e. Medical Advisory Board All of DSUK'S educational activitie$ infomed by the charity's Medical Advisory 8oard Chald by Profe$$or Helen Cross of Great Ormond Street Hospital In this reporting perKKI we were extremely pleased lo announce three new members to the Board with the aim of addin9 experience In general adult neurology and neuropsychology as well of ensuring continuity In having a nursing perspective with Neil Williamson stepping back from ltte Medical Advisory Board lo become a DSUK Trustee. As an outcome we made the following apFoinlmenls in January 2021. Amanda Tomalin, Paediatric Epilepsy Clinical Nurse Specialist, Evelina". Dr Julia Aram, Consultant Neurologist. Brighton and Sussex. and Professor Mike Kerr, Retired Clinical Professor, Dept. of PSYchotyal Medicine and Clinical Neurosciences, Cardiff. Research In 2020121 DSUK spent £88.130 on novel research into Dravet Syndrome. This included providing funding for novel gene therapy as described below. In this reporting period DSUK participated in a research call with Great Omond Street Hospital Charity and Sparks Charity. As an outcome ftjnding tolalling £248,000 was awarded lo a novel gene therapy project led by Dr Raj Karda. Gene Iherapy is a technology that aims lo deliver gene elements lo augment or modulate the expression of a patnts mutsled gene. to ameliorate disease pathology. One of the most common ways lo do this is lo use a vehicle (known as a -vector'l lo deliver therapeutic genes lo cells. A major barr¢er to progressing gene therapy for Dravet Syndrome Is that SCN1A. as a very large gene, is loo big lo deliver via a standard, single vector. The ftjnded project identified an innovative solution lo this barrier, using a pioneenng gene editing technology (known as CRISPRI lo split the SCN1A gene in half and use ts¥o vectors lo delNer therapy Irealmenl lo a mouse model of Dravet Syndrome. Excitingly. the research showed rt is possib lo split SCN1A and recombine it within the mouse model. Although the gene therapy itself did not prove effective in treatsng the mice, the project made important progress in understanding the havIour and expie5sion of SCN1A, and DSUK'S funding was an invaluable springboard to future researeh. enabling the team to further refine their approach via ongoing. follow-up research projects. 10-
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustses. Annual Report fconllftu•dJ Year Ended 31 January 2021 Achlevements and pertomianco (conllftu COVID-19 and Dravet Syndron Al the oulsel of the pandemie DSUK led an initi.ative with Professor Sanjay Sisodtya and Dr Simona Baleslrini lo gather a 5napshol of the impacl of Ihe virus on people with Dravel Syndrome to inform ca and treatment. DSUK initiated a suNey with familEs. whKh led to feport being produced by Professor Sisodiya and Dr 8aleslrini that was published on the DSUK website. 116 families responded lo the survey of which 74% were in resCl of children and 26% in respect of adults. Key findings from the survey include.. 'Extremely vulnerable, status for risk of severe forn of COVIO-19 was given lo 43% people with Dravet Syndrome by a GP or neurologist Even if not deemed 'extremely vulnerable,. famil adhered to shielding. with 91 % of respondents shielding their childladull al the lamily home during Ictkdown Symptoms compatible wrth COVID-19 were re[ed in 19% of indNiduals {with no significant difference beeen children and adults with Dravel Syndrorrel Among symptomatic individuals, onty 4 had a Iswab} lest, none of which was positNe', one person had antibody testing IbLrt not swab 18sting}, whKh was positsve for COVID-19 There We no deaths and, in most ¢ases, the outcome of infe¢lion was 'bensgn' lonly 50A required hospilalisation due to severty of symptoms and all r0vered) Seizure worsening was reported lincreased seizure frequency or duration or both) in 50% of those who developed possible or Probab COVID-19 symptoms The presence of comrbidibe5. including susceplibilty to respiratory infe¢lion$, swallowing difficulties, and spinal abnomialilies. was not signifantlY assocled with the presentation of COVID- 19 symplorns Global call for Dravel Syndrome research In 2020121 for Ihe ffiisl lime DSUK participated in a global research call led by the Associazione Gruppo Famiglie Dravel IGFDI, an Italian Dravet Syndrome pabenl advocacy charity dedicated to supporting the highe$l quality ba$1¢ or ¢lini¢al resear¢h on Dravel Syndrome. This eall solieils innovative explorative proje¢ls that are not ¢urrenlly funded by other agencies became of their preliminary nature. Dravet Syndrome charities globally committed É125,000 in totsl lo this call, of which DSUK committed £20,000. Fourteen research proposals were shortlisted and al the time of writing this report. these short-lisled projects are being assessed. 11
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustses. Annual Report (coftlinued) Year Ended 31 January 2021 Flnanclal revlew Incoming Resources In 2020121 DSUK received £345,071 in incnrM from the following sources £136,238 £119,343 £55.000 £26,225 £8,265 Communty fundraising Industry grants Corporate sponsorship Giants from TruslslFoundalvJns Income generation Historically community fvndraising has been an important source of incotrt for DSUK, wrth £209,418 raised in 2019120. With the onset of the pandemic il was not possible for the nom)al community fundraising activiltes lo take place such as marathons, treks elc. meaning only £136.238 was secured. ilsl DSUK saw growth in giving via Facebook le.g birthday fvndraisersl this did not compensate for loss of income via JuslGiving. which typically accounls for in-person challenge events. In response DSUK sought to drive virtual fvndraising campaign5 al key points of the year including Intemational Dravel Syndrome Awareness Month. International Epilepsy and Tuesday Giving over Christmas Despite the sharp drop in income from community fundraising OSUK was able to hold up ils income by increasing income from other $ours. Grants from the National Lottery, Pears/DMCS and DM Thomas Foundabon for Young People conlribuled to growth in granl income from £11.689 In 2019120 to £26,225 in 2020121. Additional support also came in thè form of a one-off grant from XTX Markets of £25,000 in addition lo £30,000 that the company generously gives lo DSUK as a corporate sponsor. a £25.000 exceptional payment from an indivual donor. growth in online shop sales following investment in new stock lincludin9 branded face masks and leisure wear) and industry grants from GW Pharma, Zogenix. Encoded and Biocodex. Outgoing Resources In 2020121 DSUK spent £305,812 delivering its charitable objeth'ves. During this reporting penc*J costs have been iUffed in respect of the following.. o Séizure monitor$. 16+ A$$i$lan¢• Fund and 8èr•avomènl Grant o Awareness raising actwities le.g. DSUK educational webinars) o Awareness raising materials le.g DSUK educational leafietsl o DSUK merchandise for fundraising events & shop sales o Staff costs with 4 people12.93 FTEI paKI for 117 hou as al 31st January 2021. 12-
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustses. Annual Report {conknu¢dJ Year Ended 31 January 2021 Finan¢lal revlew {¢¢NTrllnu Reserves Policy Dravel Syndrome UK is required to ensure that free are available in each financial year lo meet any reasonably foreseeable contingency. The Iruslees have determined that 'free' reserves should idealty be al least six months of normal operating expenditure. which is considered by the tnjslees lo amount lo around £232,000 based on estimated expenditure ft)r 2021122. At 31 January 2021. the unrestncted reserves of the charity amounted to £386,468. of which £95,663 has been designated by the trustees fof research purposes and for educational materials. leaving free reserves of £290.805 at that date. compared lo £263,243 at the previous year*nd date 11 is anticipated that the desKJnated fvnds balances relating lo educational materials and research as at 31 January 2021 will be fulty expended by 31 January 2022. Looking ahead to 2021122. the Iruslees will be kun¢hing DSUK'$ S-year Strategy for 2021 10 2026. In order to deliver this strategy, the Trustees will be investing al least £45,IX)O of available free reserves in order lo lay the foundations for organisational growth. 13-
Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustees, Annual Report{eontinued) Year Ended 31 January 2021 Plans for future pgriods In this reporting penc4Y the Board of Tnjstees approved DSUK'S first five-year strategy for 202110 2026, which was launched in February 2021 This strategy aims to reach mre families. to deliver research that puts family needs first. to improve awareness and understsnding amongst professionals. partieularfy in adutt nevrology and social services. and to give families the Iwls and support needed to assert their rights. Underpinning the stralegy are four overarching objectives 1. Every Famity Matters Every UK family living with Dravet Syndrome will be aware of DS UK and the support available, be enabled lo access this support as required, and know that all acbvib"e5 and research are driven by the things that matter most to them. 2. Leaders in the Field DSUK will lead the conversabon atx)ul Dravet Syndrome in the UK, making the best possible use of its research ftjnds, collaborating intemabonalty as opportunities arise. and developing an authoritsb've global voice. 3. Support for Professionals We will seek lo broaden the range of heahh and sccial care professionals wrth an improved understanding of Dravel Syndrome. enabling eadier diagnosis and providing accessible pathways to the best possible treatment and care for all ages. 4. Empowerment of Families Families living with Dravet Syndromewill know and understsnd their rights and feel empowered to assert Ihese rights to gel the support they need. We have come a long way supporting children and adutts with Dravel Syndrome but there is further lo go. Families are still waiting too long for a diagnosis. We do not know enough about the ¢omorbidilies of Dravel Syndrome and the SFeclrum nature of the condition. Transits"on into adult health care service5 remains challenging and many families struggle lo access Ihe statutory support they are entitled lo. We know we have given ourselves a lot to do bul we believe this is the right b.me lo move forward and. more mportanlly, this is the right way for us to support everyone who lives with Dravet Syndrome and all ils challenges. With our families behind us and a strong and eommrtted team of staff. trust and medical advisors we are ready and excited to gel on wrth this woth. To deliver this strategy we will be putting robust plans in place, particularty lo secure the resources needed to achieve our ambitions while also being responsive lo the UncertainlS of these b'mes. In 2021r22 we will be designating our free reserves to enable this growth and as such will have an income to expenditure deficrt as we bring our reserves in line with our reserves policy. In taking this approach we wll be better placed lo grow income from trusts and foundations from 2022123 onwards as many donors precluding applications from charitses in excess of their reserves policy. There is so much to be hopeftjl for as we Icrt)k ahead. and the next 5 years is just the next milestone, not the end of the road. We are really excrted by the possibilities of the coming years There are gene therapies on the horyzon, and other new treatments in developn*nl, as well as all the work we are planning with this new strategy. We look forward with confidence, excitement and hope that DSUK can and will make a difference for every famity living wth Dravet Syndrome in the UK. -14-
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustees. Annual Report Ictyiiinu•dJ Year Ended 31 January 2021 Trustees. responslbllllies stslement The Iruslees afe responsible for prepanng the trustees, report and the financial statements in accordance with applicable law and United Kingdom Accounbng Stsndards (Unrted Kingdom Generally Accepted Accountsng Pracb¢e) The law applicable lo charities in England and Wale5 requires the charity tfU5tees lo prepare financial ststemenls for each year which give a true and fair view of the state of affairs of the chanty and of the incoming resources and applution of $OUrCes, of the charity for that perico. In preparing these financial statements, the trustees are required io". select suitable accounting polic$ and then appty them conSisteny.' observe the methods and principles in the applKable Charities SORP., make judgments and a¢¢ounting eslimales that are reasonable and pwdent., ppare the finala1 stateff*nts on the going concem basis unless rt is inappropnate lo presume that the charity will continue in business. The Iruslees are responsible for keeping adequate accounting records that are sufficient lo show and explain the charity's transactions and disclose wrth reasonable accuracy al any bme the financial position of the chanty and enable them lo ensure that the financial statements comply with the Charities Act 2011, the applicable Charities {A¢¢ounls and Reports) Regulations. and the provisions ol the Trusl Oeed. 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. The trustees, annual report was approved on 9 Juty 2021 and signed on behalf of the board of Iruslees K Hughes Trustee -1s-
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Independent Auditor's Report to the Members of Dravet Syndrome UK Year Ended 31 January 2021 Oplnlon We have audited the financial statements of Dravet Syndrome UK Ithe 'charity'l for the year ended 31 January 2021 which comprise the Statement of financial activities lincorporaling Incorne and expenditure account). ststernent of financial positn and the related notes, including a summary of significant a¢counling policies The financial reForting framework that has been applied In their preparatn 15 applicable law and United Kingdom Accounting Standards, including FRS 102 The Finan¢ial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practs"cel. In our opinion the financial statements. give a true and fairview of the state ofthe charity's affairs as at 31 January 2021 and of ils incoming resources and appliealion of resources, including ils income and expenditure. for the year then ended, have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practe., have been prepared in accordance with the requirernents of th& chan15 A¢t 2011. B•81• for oplnlon We conducted our audit in acrdanCe with Internatsonal Standards on Auditsng IUKI IISAS IUKII and applicable law. Our re5pon5ibilities under those standards are fvrther described In the audil0rf5 respon51bililie5 for the audit of the financial stateff*nls sectson of oui report. We are independent of the charity In accordance with the ethical requirements that afe relevant lo our audit ol the financial statements In the UK, including the FRC'S Ethical Standard, and the provisions available for small enlilies. in the circumstances sel out below. and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe Ihal the audit evKlence we have obtained is sufficient and appropiiate lo provide a basis for oui opinion. In common with many other charities we use our auditors to assist in the preparabon of the slalulory financial stalemenls. We also engage our audrtors lo provide bookkeeping and payroll preparation services. Conclu8lon8 r•l•tlng to golng ¢on¢•rn In auditing the financial $tatemen15. we have concluded that the Iruslees. use of the going Concern basis of accounting in the pffjparalion of the financial statements is appropnate. Based on the work we have performed. we have not kJentyfied any matenal un¢ertainlie$ relating to events or conditions that, individualty or ¢olle¢tively. may cast Significant doubl on the ¢harity's ability to continue as a going concern for a period of at least hvelve months from when the financial slalemenls are authorised for issue Our responsibilities and the responsibilrties of the trustees with respect lo going ¢on¢em ar8 described in the relevant sections of this report. -16-
Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Independent Auditor's Report to the Members of Dravet Syndrome UK (¢oniints¢dJ Year Ended 31 January 2021 Other Infornlatlon The other infofmabon ¢omwises the infomiats'on included in the annual report, other than the financial statements and our auditor's report thereon. The trustees are responsible for the other infomation. Our opinion on the financial statements does not cover the othei information and. except lo the extent otherwise explicitty stated in our report. we do not express any fom of assurance conclusion Ihereon. In ¢onnection wrth our audtt of the financial ststements, our resp)nsibility is lo read the other information and. in doing $0, ¢onsider whether the other infonnabon is malerialty inconsistent with the financial statements or our knowledge obtsined in the audit or othemise appears to be materialty misstated. If we identify such material Inconsistencies or apparent material Misstatements, we are required to determine whether there is a material misstslement in the financial statements or a material misstalemenl of the other information. If. based on the work we have performed. we conclude that there is a material misstatement of this other Information, we are required to report that faet. We have nothing lo rewrt in this regard. Matters on which we are required to report by exception In the light of the knowledge and understsnding of the charity and its environment obtained in the course of the audit, we have not identified material misstatements in the tTUStees' report. We have nothing to report in pect of the following matters in relation to which the Charities Act 2011 Tequires us to report to you if, in our Opinn.. the information given in the trustees. report is inconsistent in any matenal respect with the financial ststements". or adequate accounting records have not been kept." or the financial statements are not in agreerrEnt with the aceounb.ng records and retums," Of we have not received all the informakn.on and explanations we require for our audit. Responslbilities of trustees As explained more fulty in the trustees, responsibilities Statement, the trustees are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for Such Internal control as the trustees determine is necessary lo enable the preparation of fi'nancial statements that are free from material misstaterrent. whether due to fraud or error. In preparing the financial statements. the trustees are responsible for assessing the charity's ability lo Continue a$ a going eoncern. diselosing. as applicable. matters related lo going concern and using the going eoneern basis of accoLTrnting unless the trustees either intend lo liquidate the charity or lo cease operations, or have no realislK altemalNe but lo do so. 17-
Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Independent Auditor's Report to the Members of Dravet Syndrome UK (contlnuots) Year Ended 31 January 2021 Audltorf8 responslbilitles for the audlt of the flnanclal Statements Our objectives are lo obtain reasonable assurance about whether the financial ststements as a whol8 are free from material mis51atemenl. whether due lo fraud or error, and lo issue an auditor's report that includes our opinion. Reasonable assurance is a high level of assurance but is not a guarantee that an audit conducted in accofdance with ISAS IUKI will aNvays detect a material misslalemenl when il exists. Misstatements can arise from fraud or error and a Consered material rf. individually or in the aggregate. they Could reasonably be expected to Influence the economic decisions of users taken on the basis of these financial stalemenls. A fvrther descriptn of our responsibilities for the audtt of the financial statements is located on the Financial Reporting Council's website at https.. www.frc.Ofg.uklauditorsresponsibililies. This description forms part of our audilorfs report. Audltor'8 rn8pon8lbllitles for det•cllng Irregularlto, Includlng fraud The objectives of our audit are to identify and assess the risks of material misstslement of the financial stslemenls due lo fraud and error, lo obtain sufficient appropriate audit evidence regarding the assessed risks of material misslatemenl due lo fraud and error.. and lo respond appropriately lo those risks Owing to the inherent limitations of an audit, there is an unavoidable nsk that material misslatemenls in the financial stslemenls may not be delecled. even though the audit is property planned and performed in accordance with the ISAS (UK). In identifying and assessing risks of material misstatement in respect of irregularitses, including fraud and non<ompliance with laws and regulalions, our procedures included the following.. We obtained an understanding of the legal and regulatory trameworks applicable to the charity and the sector in which they operate. We delemined that the following laws and regulations were most significant., the Charities Act 2011. health & safety law and employment law. We obtained an understsnding of how the charity is comptying with those legal and regulatory frameworks by making Inquiries lo relevant rrembers of the management team. We corroborated our inquines though our review of Injslee and management rrffttsng minutes and Inquiry into legal fees incurred in the year. We assessed the susceptibility ol the chanty's financial statements to material mi$stalement. including how fraud might occur. Audit procedures perfomed by the engagement team included.. Identifying the Controls management has in &lace to prevent and delecl fraud and assessing ttte operation of these controls Understanding of how those Charged wilh govemance consKJered and addressed the potential for override of controls or other inappropnale influence over the financial repo.n9 process Identifying and lesbng ioumal entne$. in particular any Joumal entries that were large or unusual in nature Assessing the extent of ¢omplian¢e with the relevant laws and regulations governing the charity and the sector il operates within. Thi5 included a review of any potential breaches during the year and since the year end.. and Challenging assumptions and judgements made by management in its significant accounting estsmales. 18-
Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Independent Auditorfs Report to the Memb•rs of Dravet Syndrome UK (continue Year Ended 31 January 2021 Auditorfs responsibilities for detecting irregularities, including fraud (continued} There are inherent limitations in the audit procedures above and the further removed that non- compliance with laws and regulations is from the events and transactions reflected in the financial slaternent5. the less likely we would become aware of it. The risk of not delecling a material misslalemenl due to fraud is higher than the risk of not detecting one resulting from error as fraud may involve deliberate concealment by means of, for example, forgery, intentional misrepresentalKfyns or through collusion. Use of our report This report is made solety to the charity's members, as a body. in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. Our audrt work has been undertaken so that we might stale to the charity's tr¢Jstees those matters we are required lo stale to them in an auditorfs report and for no other purpose. To the fullest extenl 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 he opinions we have formed Timothy Leeman BA CA (Senior Statutory Audrtor) For and on behaff of MCABA Limited Va Mitchells Chartered accounlanls & statutory auditor 91-97 Sallergate Chesterfield Derbyshire S40 1LA Dale". Au21. -19-
Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Statement of Financial Activities (Incorporating Income and Expenditurn Account) Year Ended 31 January 2021 2021 Reslricled funds Total funds Total funds 2020 Unrestricted funds Income Donations Chanlable activib.es Other trading activities Investment income Other income 264,352 72,454 336.806 339,931 14,751 3,407 111 7,286 59 920 7,286 59 920 Total Income 272,617 72,454 345.071 358,200 Expenditure Expenditure on raising funds.. Costs of raising donab.ons and legacies Costs of other trading actsvities Expenditure on charitable actwitses Total expendlture 20,176 4,490 248,981 20,176 4,490 281,146 305,812 21,172 1,433 342,828 10 11 32,165 273,647 32,165 365,433 Net incomollexp8Trditurel and net movement in funds {1,0301 40,289 39,259 17,2331 Roconciliation of funds Totsl funds brought forward Totsl funds carried forward 387,498 387.498 394,731 386,468 40,289 426.757 387,498 The ststement of financial activrtw includes all gains and losses recognised in the year. All income and expenditure denve from conkn"nuing activth"es. The notes on pages 22 to 31 fomi part of these financial ststements.
Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Statement of Financial Position 31 January 2021 2021 2020 Fixed Assets Tangible fixed assets 18 104 320 Current Assets Stocks Debtors Cash at bank and in hand 19 20 14,264 81,825 363,363 459,452 11.140 39.433 345,498 396,071 Credltors: amounts falling duo wlthln ono yoar Net Current Assots 21 6,236 8.893 387,178 387,498 453,216 453,320 Tot•1 Assets L•88 Current Llabllltl Credltorn: amounts falllng du• •ftor more than one year N•t A••ets 22 26,563 426,757 387,498 Funds of th• ChaTIty Reslricled funds Unreslricled fvnds 40.289 386,468 426,757 387,498 Tol•l charlty funds 25 387,498 These financial statements were approved by Ihe board of trustees and authorised for issue on 9 July 2021 and are si9ned on behalf of the toard by: K Hughes Trustee The note¥ on pages 22 to 31 forni part of th•se financial ststements. 21
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Notes to the Financial Statements Year Ended 31 January 2021 General Infomatlon The charity is a registered charity in England and Wales and Is unincorporated The address of the principal office is PO Box 756, Chesterfield, Derbyshire, S43 9EB. ststomont of compllan¢• These financial statements have been prepared in complBn¢e with FRS 102, 'The Financial Reporting Standard applicable in the UK and the RepublK of Ireland.. the 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 IFRS 1021 Icharilies SORP IFRS 10211 and the Charities Act 2011. Accountlng pollcS88 B•$l• of prnparatlon The financial statements have been ppared on the historical ¢ost basis. The financial statemènts are prepared in sterling. which is the fvnctional currency of the entity. The charity meets the definilK)n of a public benefit enlty under FRS102. Golng concern Whilst the global economy has been Sign[fanty impacled by the effect of the COVID-19 pandemic, the mana9emenl and Iruslees have realigned Iheif strategy and working practices to meet the demands arising from an ever-changing environment and continue lo adapt in response lo change The Iruslees have prepared and feviewed forecasts and are confident that these show that the charity is able lo operate within Ils available resources and meet its liabilities as they fall due for the foreseeable future Accordingly. the twstees ConSer it appropriate lo continue lo adopt the going concern basis of accounbng in preparing the financial statements. Judgement• and key •ourcM of •stlfflatSon unc•rtalnty In applicatn of the charity's accounting the tnjstees are required to make iudgemenls. esbmale5 and assumptions about the ¢arrying affnt of assets and Iiabililies that are not readily apparent from other sou¢e$. The e$limates and assoeiated assumptions are based on historical experience and other fa¢tors that are considered lo be relevant. Actual results may differ from these estimates The estimates and undertying assumpbons are reviewed on an ongoing basis. The Iruslees conSer that there are no key sources of eslimats'on uncertainty affecting these financial slatemenls. Fund accountlng Unrestricted ftjnds a available for use at the dIScli0n of Ihe InJslees to further any of the charity's purposes and general obieelives. Designated funds are unreslricled funds sel aside by the Iruslees for parti¢ular futu Pfojecls or commrtments. Restricted funds are subjected lo striction5 ori their expenditure imposed by the donor or which have been raised for particular purposes. Any costs of raising and administering such funds a charged against the specific fund. -22-
Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Notes to the Financial Statements (c¢7ntlnuedJ Year Ended 31 January 2021 Accountlng poli¢le$ f¢Miirt4rtd) Incoming resources All income is included in the stslement of financial aclNitI'es when enlrtlemenl has passed lo the chanty, It is probable that the economic benefits associated with the transaction will flow lo the charity and the amount can be reIbty measured. The followng specific policies are applied lo particular categories of income". income from donations or grants 1$ recognised when there is evidence ol entitlement to the gift or grant. receipt is ¢on$idered probable and its arrounl can be rreasured reliabty. - income from the sale of merchandise is recognised at the p)inl of sale. income from donated seNrces and facilities are recc*3nised as income when the charity has control over the item, any conditions associated with the donated rtem have been met, the reeeipt of eeonomic benefit from the use by the charity of the item is probable and that economic benefit ¢an be measured reliably. Resources expended Expenditure is recognised on an accruals basis as a liability ts incurred. Expenditure on raising funds includes the costs of all fundraising activits'es, events, non-chanlable trading activilÈs, and the sale of pUhased and donated g¢)ods. Expenditure on charitable acbvibes includes all costs incurred by a chanty In undertaking aelivities that further rts charitabk aims for the benefit of its beneficianes. including those support costs and costs relating to the govemance of the charity apports.oned lo charitable activities Tangible assets Tangible assets are inilialty recorded at cost, and subsequenuy stated al cost less any accumulated depreciation and Impairment losses. Depreciation Depreciab"on is calculated so as to write off the cost or valuation of an asset. less its residual value, over the useful economi¢ life of that a$5el as follows". Fixtures, fittings. equipment Computer equipment 25% straight line 33% straight line Stocks Stccks of g(fvJds for resale are measured at the lower of cost and nel realisable value. Penslons The chanty operates a defined contribution Fension scheme. the assets of which are held separately from those of the charity. Conth'bubons payable for the year are shown wrthin the statement of financ1 activib'es. -23-
Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Notes to th• Financial Statsments fcoftbnuedj Year Ended 31 January 2021 Donatlons Unreslricled Funds Reslncted Total Funds Funds 2021 Donatlons Donations Donated services and facilrtEs 180.281 10.957 191,238 Grdnts Grants receivable- DSUK conference Grants feceivable - Center Parcs event Grants receivable - monitors Grants receivable - eduealional malerials Grants receivable - others Grants receivable - educational videos Grants receivable - COVID-19 assistsnce Grants receNable - 16+ grants to beneficiaries 9.817 9,817 30,000 1,553 36,825 62,373 5,000 30,000 1,553 36,825 9,855 5.000 52,518 264,352 72,454 336.806 Unrestricted Funds Resth'cted Total Funds Funds 2020 Donation$ Donations Donated services and facililEs 232,653 1.500 185 232,838 1,500 Grants Grants re¢eNable- DSUK Conference Grants receNable- Cenler Parcs event Grants receivable- nN)nrtors Grants receNable- educational materials Grants receNable- others Grants receNable- educational videos Grants receivable- COVID-19 assislance Grarsls receivable_ 16+ grants lo beneficiaries 30.OCw) 40,000 9,843 10,000 70,000 9.843 10.000 15,000 750 15,000 750 279,903 60,028 339,931 The trustees confimi that the above restncted incorre recognised in respect of the DSUK Conference 2019 is compliant with The Associakn"on of the 8ribsh Pharmaceuti¢al Industry Code of PraclKe. Charitable activities Unrestricted Total Funds Unreslrieted Total Funds Funds 2021 Funds 2020 Fundraising events income 14,751 14,751
Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Notss to the Financial Statements (conknu•dl Year Ended 31 January 2021 Othor trading activities Unreslricted Total Funds Unlestrted Total Funds Funds 2021 Funds 2020 Merchandise sales 7.286 7,286 3,407 3,407 Investment Income Untn.¢1ed Total Funds Unrestn'cted Total Funds Funds 2021 Funds 2020 Bank interest receivable 59 59 111 111 Other Income Unrestn"¢ted Totsl Funds Unrestricted Totsl Funds Funds 2021 Funds 2020 Consullancy services 920 920 Costs of ralsing donatlons and legacles Unrestricted Total Funds Unrestricted Total Funds Funds 2021 Funds 2020 Event Costs Wages and salaries Employerfs NIC Pension costs Just Giving charges 146 16.635 1,110 372 1,913 20.176 146 16,635 7,312 10,015 7,312 10,015 372 1,913 20,176 3,845 3,845 21,172 21,172 10. Costs of olher trading activities Unrestricted Total Funds Unrestricted Total Funds Funds 2021 Funds 2020 OFening stock Purchases Closing stock 4.716 13.920 114.146) 4,716 13,920 (14,146) 4.490 5.634 515 14.7161 5,634 515 14,7161 4,490 1,433 1,433
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Notes to the Financial Statements (conunuedj Year Ended 31 January 2021 11. Expendlture on charftable activltles ty activity ty AclNil undertaken directly Support Tolal funds costs 2021 Total fund 2020 Research funding Raising awareness Supporting families Governance costs 97.087 39.337 102.125 9.320 3.776 9.805 19.6 106.407 43.113 111,930 19.696 98.456 129,647 100,594 14,131 238.$49 42.597 281,146 342,828 12. Analy•l• olsupport costs Analysis of support costs charitable tivities Total 2021 Totsl 2020 Staff costs Premises Communications and IT Human resources Finan¢e ¢osl$ Governance ¢o$ls 13,886 485 7,938 1.509 104 18.675 13,886 7,342 2,087 $6,7S6 7,938 1.509 104 18,675 42.597 117 12,631 42.597 79,773 13. Net Incomellexpgndlturn) Net incomellexpendrture} is slated after chargingllcreditingl.. 2021 2020 Depreciation of tangible fixed assets 216 512 14. Audltors r•fflun•ration 2021 2020 Fees payable for the audit of the financial StalennIS 4,200 15. Ind•p•nd•nt •xamlnatlon fe•8 2021 2020 Fees payable lo the independent examiner for". Independent examination of the financial statements 2,330 -26-
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Notes to the Financial Statements (eonrtlnu8d) Year Ended 31 January 2021 16. Staff costs The total staff ¢osts and employee tenefits for the reporting period a analysed as follows." 2021 2020 Wages and salarS Social security costs Employer contributions lo pensDn plans 116.757 7.331 2,477 126,565 73,422 3,320 861 77,603 The average head ¢ount of employees dunng the year was 412020". 31. No employee received employee benefit$ of rrore than £60.0fy) during the year12020.' None). Kfry Managoment Pfrr8onn•l Key management personnel include all persons that have authority and responsibility for planning. directing and controlling the activities of Ihe charity The total compensation paid to key management personnel for servus provKled to the charity was £52.37112020'. £22.1491. 17. Trustee rnmunoratlon and oxp•n••8 A formor trusteè. T Finch, is employed as a Famity Support Manager by the charity. In Ihis capacity she received remuneration of £15,462 during her tenure as a trustee In the comparative period. No other Trustee was remunerated through the charity either In the Comparative year or the year under revièw. Three trustees 12020.. 11 have claimed expenses or had their exn$8$ m?t by the charity as follows.. 2021 2020 Travel Sundry 154 1,062 18. T•ngible fixed •s•ots Fixtures and ffittings Equipment Total Cost At 1 February 2020 and 31 J•nuary 2021 Depreciation Al 1 February 2020 Charge for the year At 31 January 2021 Carrying arnount At 31 January 2021 Al 31 January 2020 490 3,403 3,893 489 3,084 216 3,573 216 489 3,300 3,789 103 104 319 320 27-
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Notes to the Financial Statements fconllnuedl Year Ended 31 January 2021 19. Stocks 2021 2020 St¢xk of merchandise and Consumables Monitor stock 14,146 118 4,716 6.424 14.264 11.140 20. D•btor• 2021 2020 Prepayments and accrued incoff Other debtor5 81.765 39.163 270 81.825 39.433 21. Cr•dltorn: *mounl• f•lllng du• wlthln on• y•ar 2021 2020 A¢¢rual$ and deferred in¢0 Social security and other taxes Other creditors 774 2,780 2,682 6,236 2.863 2.197 3.833 8,893 22. Crndltorn: amounts falllng du• aftor mov• Ihan ono y••r 2021 2020 Ac¢rual$ and deferred inco 26,S63 23. D•fgrr•d In¢om• 2021 2020 Al l February 2020 Amount released to income Amount deferred in year 49,843 149,8431 26.563 At 31 January 2021 26,563 Deferred in¢ome al the yearond relates the delayed Center Parcs event now scheduled to be held in June 2022. 24. P¢n$lon$ and othev po8t4etlrement benoflts Doflnod contrlbutlon pl•ns The amount recognised in inco or expenditure as an expense in relation to defined ¢ontribution plans was £2,47712020: £8611 -28-
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Notss to the Financial Statements Year Ended 31 January 2021 25. Analys18 of charltable funds Unrestricted funds At31 January 2021 Febnjary 2020 Income Expenditure General fvnds Designated fvnd - research Designated fund - educational materials 263,243 109.255 224,036 18.581 1196,4741 177,1731 290.805 50.663 15.OLh) 30.OCw) 45,000 386,468 387,498 272,617 1273,6471 A11 February 2019 A131 January 2020 Income Expendrture General funds Designated fijnd - research Designated fvnd - edsjcalional materials 252,550 142.181 244,905 38,287 1234,2121 171,193} 263,243 109,255 15,01)J 15,000 387,498 394.731 298.172 1305,4051 The Iruslee5 designate a proportion of unreslricled fvnds reiVed by the Charity each yeaf lor Ihe purpose of funding of medical research into Dravet Syndrome. Unreslricled grants lo which entitlement passed lo the chafty prior to the close of the 2020121 financial year have been allo¢ated by the trustees to the provision of educational materials in the 2021122 financial year, as part of the ongoing drive lo raise awareness of Dravel Syndrome. The projeel has been delayed due lo the CQVID-19 pandemic.
Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Notes to th• Financial Stat•ments (conttnu Year Ended 31 January 2021 25. Analylls of charltablo funds (¢tsnlthuod) Restrlcted funds A11 February 2020 At31 January 2021 Income Expenditure Reslricled fund - conference Reslricled fund research Reslricled fund - Cenler Parcs event Reslricled fund - monitors Reslricled fund - COVIO-19 assistance Reslri¢led fund - 16+ grants lo beneficiaries Reslricled fund - educational VHJeos 10.957 110,9571 9,817 9,855 19,8171 19,8551 5.000 36,825 11,5361 3,464 36.826 40.289 72.454 132.1651 At1 February 2019 At31 January 2020 Income Expenditure Reslricled fund - conference Reslricled fund - research Reslricled fund - Center Parcs event Reslricled fund - monitors Reslrieled fund - COVID-19 assistance Reslri¢led fund - 16+ grants to beneficiaries Re51ricled fund - educatal videos 40,000 185 9,843 10,000 140.0001 11851 19.8431 110.CM)O 60,028 160,0281 26. Anaty•l• of net as betwe•n fvnd• unles1rted Funds ReslTiCted Total Funds Fund5 2021 Tangible fixed assets Current assets Creditors less than 1 year N•t a$8•ts 104 419.163 {32.7991 386.468 104 459,452 132,799) 426,757 40.289 40,289 un$tCted Funds Restricted Totsl Funds Funds 2020 Tangible fixed assets Current assets Creditors les$ than 1 year Net a$8ets 320 396.071 18,8931 387.498 320 396.071 18,8931 387.498
Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Notas to the Financial Statements l¢onthiu•dJ Y•ar End•d 31 January 2021 27. R•lat•d p•rtl•• No transactions rekted ¢xcurred In either the current or coffyarative years whh require disclosure wilhin these financial staten*nts. -31-