Registered charity in England & Wales111368091 and in Scotland ISC0467351 Registereé in England &
Wales Company number.. 07278507
Reverse Rett
Report and financial ststements for the year ended 31 December 2021
Reverse Rett
Trustees. annual report
For the year ended 31st December 2021
Reference and Administrative details for the year ended 31st December 2021
Company number 07278507
Charity number 1136809 (England & Wales) and SC046735 (Scotland)
Registered office and
operatlonal address:
Statham Link Suite IF
Lancastrian Office Centre
Talbot Road
Old Trafford
Manchester
M32 OFP
TrusteeThrustees, who are also directors under company law, who served during the year and up
to the date of this report were as follows:
John Sharpe Chair
Helen Simmonds
Wice-chair
Dr Ruksana Ahmed- joined 07.07.21
Andrew I Stevenson
Rachael Stevenson
ortensia Martinotti
Catherine McKinney
Kate Mcmaster
Rita Ross
Neil Buckley -resigned 25.03.21
Joanna Snyder
Mwangala shomwa joined 04.05.21
*Tru5tees who are also Directors of the charitable company. The number of guarantee members is 11.
Key management. Rachael Stevenson CEO
Bankers.
Barclays Bank 102 High Street, Thame, Oxon, OX9 3DU
Independent auditors
Slade & Cooper Limited, Beehive Mill, Jersey St, Manchester, M4 6JG
Reverse Rett
Trustees. annual report
For the year ended 31st December 2021
The trustees present their report and the audited financial statements for the year ended 31 December
2021. Included within the trustees. report is the directors. report as required by company law.
Reference and administrative information set out on page I foms part of this report. The financial
statements comply with current statutory requirements, the memorandum and articles of
association and the Statement of Recommended Prartice - Accounting and Reporting by Charities..
SORP applicable to charities preparing their accounts in accordance with FRS 102.
Objectives and activities Mission
Reverse Rett is a patient advocacy and research organisation focused on delivering treatments and a
cure for Rett Syndrome to everyone affected.
Objects as set out in the charl$ governing document
Reverse Rett exists to relieve sickness and to preserve health for the public benefit by
developing treatments and cures for Rett Syndrome and related MECP2 disorders, in
particular but not exclusively by:
Funding laboratory and clinical research projects
Advocating for ac55 to treatments and therapies for all affected patients
Disseminating research and health infomation
In(asIng general public awareness and knowledge of Rett Syndrome and
related MECP2
disorders.
Main activities undertaken in relation to objects
Children and adult5 Wlth Rett Syndrome are at the heart of everything we do in line with our mission to
deliver treatments and a cure to everyone affected.
Four vital pillars underpin our work:
l. Research
We fund research projects that will lead to better outcomes for children and adults with Rett
Syndrome both now and in the future.
2. Advocacy
We advocate for access to treatments and therapies for all affected patients.
3. Outreach
We increase public awareness and knowledge of Rett Syndrome and related MECP2 disorders so
that we can register and contact afferted patients who may benefit from emerging treatments.
Reverse Rett
Trustees. annual report
For the year ended 31st December 2021
4. Clinical care
We improve clinical care and outcomes for complex UK children and adults with Rett Syndrome
whilst disseminating research and clinical best practice information to improve management of all
those affected.
Publlc benefit
The trustees review the aims, objectives, and activities of the charity each year. This report looks at
what the charity has achieved and the outcomes of its work in the reporting period. The trustees report
the success of each key activity and the benefits the charity has bmught to those gmups of people that
It is set up to help. The review also helps the trustees ensure the charity's aims, objectives and
activities rernained focused on its stated purposes.
The trustees 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 its future activities.
In particular, the trustees consider how planned activities will contribute to the aims and objectives
that have been set.
Reverse Rett
Trustees. annual report
For the year ended 31st December 2021
Activities and projects
I. CIPP Rett Centre. King's College London. £315.836 {includes note 2. below £12.000)
Reverse Rett provides core funding for the CIPP Rett Cent, the UK'S only Rett Syndrome
clinical treatment and research Centre based in South London at the Maudsley Hospital and
King's College London and led by Professor PJ Santosh.
The CIPP Rett Centre focuses on developing digital health strategies to monitor and manage
patients whilst condutting translational research using the HealthTracker platform, providing
holistic specialist Ca and condurting clinical trials.
Reverse Rett has committed to providing core funding to the CIPP Rett Centre at a cost of
£998,000 over three years from September 2019-September 2022. In March 2022, subsequent
to a formal review of the Centre's activities, the Board of Trustees of Reverse Rett voted to
extend funding for the Centre until September 2023 due to the extenuating circumstances of the
effects of the pandemic on the Centre's activities.
In 2021: Funds delivered to CIPP Rett Centre totaled: £315,836
2. CIPP Rett Database
£12,000 is the pro rata sum {2021) for the software linse for the HealthTracker platform.
The HealthTracker is an online digital platform, tailored for patients with Rett Syndrome
through which families and caregivers can report the patient's symptoms on an ongoing
basis.
Data are then analysed on an individual level, to check for changes in the presentation of symptoms
and to alert local clinical teams and on a group level, to assess patterns in presentation across the
disease group or sub-groups, elucidating wider leaming within the field.
3. MECP2 Duplication Syndrome (MDS) research funding via the Rett Syndrome Research
Trust (USA)
Reverse Rett funds MECP2 Duplication research through our longstanding partnership with the US
based, Rett S ndrome Research Trust
RSRT
In 2021.. Funds delivered to RSRT MECP2 Duplication projects totaled £14,484
4. Contributions to the international research program at the Rett Syndrome Research Trust
(USA)
Reverse Rett funds laboratory research through our longstanding partnership with the US based
RSRT. In 2020, contributions to RSRT We dramatically affected by the pandemic's effect on
fundraising. In 2021, with the recommencement of some fundraising activities and adjustment to
the changes in fundraising, regular and significant contributions have resumed.
In 2021: Funds delivered to the RSRT international research program totaled £IDO,000. These
funds supported the work of the Cobb and Bird Labs at the University of Edinburgh.
Reverse Rett
Trustee5' annual report
For the year ended 31st December 2021
5. Clinical trial expenses £20,390
In 2021, Reverse Rett provided support for the UK clinical trial of Anavex 2-73 in adults. Reverse
Rett provided identification, recruitment and retention services to Anavex. The Clinical trial
expenses detailed are the costs for patient travel, accommodation, and rneal allowances for study
visits. These funds were provided to the charity in advance of the study visits and deployed and
accounted for accordingly with reports sent back to the sponsors on a quarterly ba515.
6. Rett Disorders Alliance £0
Reverse Rett holds the fund for the Rett Disorders Alliance. In 2018, a grant of £5000 was received
from the Bolland Charitable Trust by Reverse Rett and designated to the Rett Disorders Alliance
fund.
These funds were used for the production and printing of the Health Checklist so that it could be
distributed to families and dinicians across the UK as needed.
In 2021: No RDA funds were spent in 2021 and the fund balance is £4,861.
7. Parent 2 Parent program £17.529
Reverse Rett is a patient advocacy and research organisation and doe5 not formally provide
support services to families of patients with Rett Syndrome. The Pant 2 Parent Project was
founded in 2012 with support from Roald Dahls Marvelous Children's Charity, to facilitate
connections between parent mentors and newly diagnosed familieslthose in need of additional
support.
Over time and with the influence of the pandemic and the effect of lockdowns on our community,
with support from Contartffhe Pears Foundation. this program evolved to become Rett Connett.
Rett Connect encompasses three projects; Parent 2 Parent, Reverse Rett Bitesize and Reverse Rett
Family Forum.
£17,529 from ContacVThe Pears Foundation supported this work.
8. Rett Registry UK £12.400
In 2021, Reverse Rett started a projert to enhance and develop the Rett Registry UK. Rett Registry
UK is the most comprehensive registry of children, young people and adults with Rett Syndrome in
the UK, but until last year, it was simply a locked spreadsheet which had no real direct benefit for
families. The overall purpose of the Registry is to provide the organisation with the logistical
information, demographics and necessary consents to contatt families re research opportunities
and to recruit patients for clinical trials.
The re-development of the Registry into an independently hosted website application has
provided parents and carers with a comprehensive suite of features to help reduce admin, link to
useful resources, and connett up to the wider community. The app also gives families and carers
direct control over their own data and the ability to continuously update the app, downloadldelete
their own dats. It has enabled the organisation to more effectively champion the need for new and
emerging treatments to be implemented in the UK and given us the tools we need to efficiently
manage clinical tmal recruitment and retention services. The Rett Registry UK was built by the
Mather Group 10 and can be found here httr
www.rettre
1st
with kind sUPPOrt from GW
Pharmaceuticals (£10,000).
Reverse Rett
Trustees. annual report
For the year ended 31st December 2021
9. Governance costs £5520
All charities registered in England and Wales with an income over £500,000 are mandated
to have an annual independent audit. These govemance costs present the cost of our
2021 audit and related accountancy services.
io. Support costs (note 71 p 23) £291.841
In 2021, support costs included the above govemance costs. office rental, general office costs
including phone, internet, printing and postage and staff costs of £219, 149.
staff costs listed here are for CEO <), Clinical Trial Lead and Supporter Care, (0.5 FTE), Finance
Officer, Office Administrator/Clinical Trial Co-ordinator, Design and Marketing Lead and Special
events fundraiser.
Staff costs under fundraising costs include.. Clinical Trial Lead and Supporter Care (0.5 E),
Events and Outreach Lead (Ft) Special events fundraiser (0.4 FtE)
Achievements and performance
The charity's main activities and who it tries to help are described below. All its charitable
activities focus on delivering treatments and a cure for Rett Syndrome and are undertaken to
further Reverse Rett's charitable purposes for the public benefit.
The main achievements of the charity
Reverse Rett has been at the forefront of UK Rett Syndrome laboratory and clinical research funding for
more than a decade. The timeline below shows key milestones demonstrating progress in the field since
the reversal experiments of 2007 and the work of Reverse Rett which was launched in 2010.
Over the last ten years, Reverse Rett has been tightly focused on research funding. Change is now
within reach. Three human gene therapy clinical trials are firmly on the horizon and as an organisation,
we need to do more.
Our first principle is equality- that all patients with Rett Syndrome regardless of age or gender,
should have access to emerging treatments and cures.
As well as continuing to fund clinical and laboratory research, we continue to seek out and register as
many UK patients as possible, wherever they are, so that we can reach them when treatments which will
improve their lives become viable. We are doing this in a few ways, through increased provision of health
information, through the Rett Connett program and more. We continue to work in support of UK clinical
trials of emerging treatments. Reverse Rett provides core funding to the CIPP Rett Centre, which
manages the health the most complex Rett patients in the country, extrapolating and disseminating
learnings which can improve the health and quality of life of Rett patients of all ages, internationally.
We are proud of our past achievements and positive about the future unfolding before us.
Below, you can see a timeline of key milestones that show progress in the field since the reversal
experiments of 2007 and in the work of Reverse Rett which was launched in 2010.
Reverse Rett
Trustees. annual report
For the year ended 31st December 2021
Organisational Achievements
2010
/ Reverse Rett is founded by five parents from the home of now CEO, Rachael Stevenson.
2011
O Launch of RSRT'S international MECP2 Consortium to combine global efforts to
find a tangible way to reverse Rett in humans.
O Winners of Best New Charity at the Just Giving Award
2012
/ Reverse Rett passes first million-dollar mark, delivering over $lm to Rett Syndmme research
mid-year.
O Winners of Best New Charity at the Just Giving Award
2013
O Gene therapy work part funded by Reverse Rett demonstrates reversibility of
symptoms of Rett Syndrome in mice.
/ The Rett Syndrome Research Trust (RSRT) launch international Gene Therapy Consortium
to compound efforts to drive Gene Therapy for Rett into human trials.
O Reverse Rett initiates a UK Patient Registry for UK patients with Rett Syndrome to ensure
readiness for UK clinical trials.
O Reverse Rett Co-Founder and CEO joins the Board of Trustees of the Rett Syndrome
Research Trust
2014
/ Reverse Rett begin seed-funding King's College London Research Team at CIPPRD, for work
focused on developing new outcome measures (TRIAL Database) for patients with Rett
Syndrome under Professor Paramala Santosh.
2015
/ The first family focu5 groups are held to inform KCL work on the TRIALdatabase.
O Reverse Rett international searCh funding to RSRT passes $5 million-dollarmark
Reverse Rett
Trustees. annual report
For the year ended 31st December 2021
2016
/ Reverse Rett facilitates the implementation of the first UK clinica I trial for an
emerging treatment (Sarizotan) for Rett Syndrome, committing funding for a
Clinical Trials Coordinator based at King's College London.
O Reverse Rett CEO gives evidence at Ethics Committee hearing for Sarizotan clinical trial.
2017
/ The Sarizotan clinical trial is launched in QI under the leadership of Dr Paramala
Santosh at King's College Hospital. London. Reverse Rett providing identification,
pre-screenlng, referral and retention servlces.
O RSRT/AveXis announcement of development of first human clinical trial for gene
therdpy in patients with Rett Syndrome.
2018
O Reverse Rett granted full membership of the UK'S Association of Medical Research Charities
(AMRC).
2nd UK clinical trial for a potential treatment (cannabidiol) launched at three UK trial sites.
Reverse Rett providing identification, pre-screening, referral and retention services.
2019
/ Reverse Rett CEO gives evidence at London Ethics Committee hearing for 3rd UK
clinical trial for an emerging treatment for Rett Syndrome.
/ Reverse Rett commits to funding the CIPP Rett Centre for three years. The CIPP Rett
Centre is the UK'S first dedicated clinical treatment and research centre for children
and adults with Rett Syndrome and related disorders and is based in London. The
CIPP Rett Centre launched in Sept 2019.
2020
0 3rd UK clinical trial for a potential treatment (Anavex 2-73) launched at KCL with two other
UK trial sites to follow. Reverse Rett providing identification, referral, and retention
services.
0 2021 Three gene therapy companies announce their intention to file IND applications for
upcoming clinical trials of gene therapy in Rett Syndrome before the end of 2021.
2021
/ Reverse Rett supports the implementation Of 31d UK clinical trial (Anavex 2-73 adults) at two
trial sites
Reverse Rett
Trustee5' annual report
For the year ended 31st December 2021
2022
/ Reverse Rett supports the implementation of 4th UK clinical trial (Anavex 2-73 paediatric) at up
to six trial sites.
O Taysha Gene Therapies files INDICTA with Health Canada and receives green light for the first
in human gene therapy trial for Rett to start this year.
Reverse Rett
Trustees. annual report
For the year ended 31st December 2021
Beneficiaries of our services
The beneficiaries of our services are children and adults with Rett Syndrome and related disorders.
Improvements in the symptoms of Rett Syndrome can have far-reaching effects, beyond the individual
patient.
There are over 50 reported symptoms of Rett Syndrome; in particular, autonomic disturbances cause
significant disruption in the lives of patients and the families who care for them. Amelioration of
symptoms such as sleep difficulties. agitation. breathing problems and anxiety can have a significant
impact on the lives of patients and families, increasing stress and isolation and impatting the health and
well-being of other family members as well as the patient.
At Reverse Rett, we work to enable patients to access emerging treatments through clinical trials as soon
as these treatments become available.
Reverse Rett has also been instrumental in facilitating the delivery of UK clinical trials through our work
in irnproving UK clinical provision for patients with Rett, the re-development of the Rett Registry UK,
our recruitment, pre-screening and retention support for clinical trials and our long-tem) commitment
to fund the CIPP Rett Centre (formerly CPMRS).
The CIPP Rett Database which monitors the condition of patients with Rett Syndrorne of all ages and
stages, all around the UK, gathering anonymized data about disease progression and burden on
patients and families which will be an integral component of driving emerging treatments through
the regulatory processes.
Both the patient-centred and digital aspects of the work of the CIPP Rett Centre simultaneously
generate learning about disease progression and management that is helping patients today,
before treatments and a cure become available.
Ultimately, a treatment focused on repairing the underlying cause of the disorder {a lack of mecp2
protein) is needed to significantly reduce or reverse several existing symptoms. Gene therapy programs
which are now being championed by industry are happening as a direct result of laboratory research
which Reverse Rett has heavily financially supported over the last decade via the RSRT MECP2
Consortium and RSRT Gene Therapy Consortium.
We hope that this year, we will begin to better understand the effects of gene therapy in people with
Rett Syndrome, as the first patients have the tremendous opportunity to trial these products. It may be
that those who are able to access cures eadier in life recover most effectively. At Reverse Rett, as well
as working to bring treatments for Rett Syndrome to fruition. we are also focused on making sure that
emerging treatments are available to patients with Rett Syndrome of all ages, stages and genders. We
believe that no one should left behind. when treatments that can drastically improve lives become our
reality.
io
Reverse Rett
Trustees, annual report
For the year ended 31st December 2021
The Board of Trustee5 of Reverse Rett would like to thank the following
companies, community groups, trusts and individuals who generously supported
our work in 2021:
Amanda Adams
Jim Amos
Archerfield Estate
Derek and Jenny Bird
S J Bradbury
Neil and Kate Buckley
Kerry Burroughs
Christopher Cant
Caterpillar Cares Society
Charities Trust
Elisabeth Christopher
Cleeve Vale Rotary Club
Jorge Conde
Core Marketing
Cure for Dylan
Keki Dadiseth
Martin Darby
Mary Davidson
Elly Douglas-Hamilton
DT Impact and Influence
Flowers by Enchantment C/0 Neil Buckley
David Ford
Sean Forde
Ray Holden
Friends of Holly
Colin Gordon
Greenergy
HG Capital
Hllnspire
Tim Jones
KDW Financial Planning
Barnaby Lashbrooke
David Lashbrooke
Danielle Ledger
Chris Lowe
Masonic Charitable
Foundation Masons
Internet Lodge 9659
Mersey Valley Golf Country club
Committee Masonic Charitable Foundation
Patricia Mccall
Scott and Kate Mcmaster
Muchloved
Murphy-Neumann Charity Company Limited
Nicky McBurney Charity Bootcamp
Kate Noble
Northern Ireland Elertricity service charities committee
Peter O'Grady
Peter Meyer Trust
Kelly Phillips
Gillian Prett
Mark Ross
Rita and Gavin Ross
Savills
John and Maureen Sharpe
Clive Sheridan
Matt Smith
Anthony and Joanna Snyder
David H Starbuck
St Michael & All Angels Church
Charlie Talbot
Thrill Collins
Thomas Mcmaster and Son LTD
Gillian Tree
Myfanwy Tree
McKay Williamson
Alvin and Stephanie Wood
Stephanie Zinser
From Grants and trusts
The Pears Foundation
Mrs F B Laurance Charitable Trust
The Munro Foundation
The Patrick & Helena Frost Foundation
The Sumray Trust
The Sylvia Aitken Charitable Trust
li
Reverse Rett
Trustees. annual report
For the year ended 31st December 2021
The Board of Trustees would like to take this opportunity to acknowledge the significant
contribution of individuals, Companies and community groups who have raised funds for
Reverse Rett via online giving facilities such as Just Givingi the Big Give Christmas
Challenge and Facebook birthdays as well as other online fundraising challenges and
campaigns. We couldn't do what we do without you.
Financial review
2020 was a difficult year for Reverse Rett. Income dropped by 270/0 compared to 2019 due to the
Pandemic and sharp decrease in fundraising events and artivities. In 2021, despite a lengthy third
lockdown and community fundraising not resuming in earnest until June/July, the year ended strongly
with a IOO/o improvement on 2020 and a return to almost pre-pandemic levels.
Projections for 2022 remained conservative and on track to meet year end estimate of £689,000. Here
are some of the income movements for our three largest income streams:
In 2021, the Reverse Rett Winter Gala was a virtual event as well as an in-person event to cover all
eventualities with the pandemic. The event income surpassed pre-pandemic levels. (2019: £138,758,
2020: £91,317, 2021.. £153,718.
The Big Give Christmas Challenge is always a virtual event. This year income from this event increased
by 260/0 on 2020. {2019'. £74,238, 2020.. £82,502, 2021: £110,788)
Just Giving income has increased by a modest 4Vo on 2021 (2019- £212,831.89, 2020: £163,395, 2021..
£169,830.43). This shows a slight recovery from the pandemic but acknowledging that online
fundraising has been through some lasting changes in the last few years which will no doubt continue to
evolve, as other more immediately accessible platforms such as Facebook online giving.
There are no uncertainties about the charity's ability to continue as a going concern.
12
Reverse Rett
Trustees. annual report
For the year ended 31st December 2021
Reserves policy
Reverse Rett 15 a parent-driven, patient organisation. Children and adults with Rett Syndrome are atthe
heartof everything we do. The relentless nature of the condition demands that they should be able to
access treatments and cures as quickly as possible.
Funds raised and donated are typically deployed to research projects on a quarterly basis. In 2020, the
charity held a greater sum in reserve because of the ongoing unpredictability of the fundraising situation
during the pandemic and the cornmitment of £998,000 over three years made to CIPP Rett Centre in
September 2019. The charity holds a minimum of 6 months running costs as free reserve.Tot31 fund5 held
at year end wa5 £293,905 of which £77,179 was restricted.
Plans for the future
In early 2021, the Reverse Rett Board of Trustees set to work to develop a new long-term strategy
for the organisation. The strategy document is entitled 'Change is within Reach,, the Reverse Rett
Strategy 2021-2026.
This longer-term plan feeds into the current dynamic annual plan and provides helpful longer-term
perspective.
In 2021, Reverse Rett is focused on-
Research:
Continuing to financially 5UPPOrt and monitor the CIPP Rett Centre and CIPP Rett Database.
Building international research contributions to RSRT to pre-pandemic levels.
Providing recruitment and retention services for on-going and new clinical trials.
Developing relationships with industry partners re emerging products.
Advocacy:
Undergoing audit of HTA preparations and access planning.
Outreach:
Increasing general public awareness and knowledge of Rett Syndrome and MECP2 Duplication
Syndrome so that we are able to register and contact affected patients who many benefit from
emerging treatments.
Directly seeking out under-represented groups and unidentified children and adults with Rett Syndrome for
the same reason.
Clinical care:
Improving clinical care and outcomes for complex UK children and adults with Rett Syndrome whilst
disseminating research and clinical best prdctice information to improve rnedical management of
everyone affected.
Structurei governance and management
Reverse Rett is a company limited by guarantee, company number 07278507 incorporated on 9th
13
Reverse Rett
Trustees. annual report
For the year ended 31st December 2021
June 2010. The company was established under a Memorandum of Association which established the
objects and powers of the charitable company and is govemed under its articles of association.
Reverse Rett is a charity registered in England and Wales, charity number 1136809 and a charity
registered in Scotland, charity number SC046735.
14
Reverse Rett
Trustees. annual report
For the year ended 31st December 2021
The first Trustees are those persons notified to Companies House as the first Directors of the
Charity. The Charity may by ordinary resolution, appoint a person who is willing to act as a Director
and determine the length of rotation in which any additional directors are to retire.
Rachael Stevenson and Andrew Stevenson were involved in the founding of the Charity and remain Trustees
to date.
The management of the company is the responsibility of the Trustees who are elected and co-
opted under the temis of the Articles of Assoclation.
The trustees are members of the charity, but this entitles them only to voting rights. The trustees
have no beneficial interest in the charity.
Members of the charity guarantee to contribute an amount not exceeding £1 to the assets of the
charity in the event of winding up. The total number of such guarantees on 31 December 2021 was
ii.
The Trustees of the Charity who served during the year ended December 31st 2021 are shown on
pl. The Trustees generally meet in person, once annually and via online conferencing on a bi-
monthly basis and as needed basis. Since the pandemic started, Trustees have met more frequently
and through online face to face meetings via Zooml
As a parent-driven, patient organisation, Reverse Rett looks first to the Rett Syndrome
community to recruit Trustees. The organisation's founding document states in section 19 that
A Director must be a natural person aged 16 years orolder.
No one may be appointed a Director if he or she would be disqualified from acting
under the provisions of article 21.
Potential trustees are nominated to the Board by one or more of the existing Board members. The validity
of the nomination is discussed. The Trustees then vote on whether to approve the membership of the
proposed individual.
No other person or external body is pemiitted to appoint charity trustees.
Induction and training of Trustees is delivered in person through one-to-one contart with the organisation's
Chairman, where Trustee's roles and responsibilities a explained and supporting information is sent to
the newly recruited Trustee as appropriate.
15
Reverse Rett
Trustees. annual report
For the year ended 31st December 2021
Reverse Rett is a full member of the umbrella organisation, the Association of Medical Research Charities
(AMRC). Membership of AMRC requires member organisations to fulfil specific criteria with regards to a
high standard of external peer review of proposed research projects and subsequent monitoring.
Detailed information about the established AMRC peer review process at Reverse Rett can be found here.
htt
www.reverserett.or
what-we-do
how-we-fund-uk-clinical-research
The Board of Trustees of Reverse Rett delegates day to day operational responsibility of the
Drganisation to the CEO, Rachael Stevenson.
In accordance with the charity's Financial Procedures Policy, expenditure of >£20K must be approved by
Board Chairrnan as well as CEO.
The Board of Trustees must review and approve:
New organisation policies
Amendments to existing policies
Funding of new research projects
Salary increases for CEO and FM
The Reverse Rett Conflirt of Interest Policy is signed annually by all Trustees.
Remuneration policy for key management personnel
Two of the charity's Trustees are full-time employees of the organisation and thus receive a salary for their
work.
As Founding Trustees of the organisation, Rachael Stevenson and Andrew Stevenson are recused from
any Board meetings to discuss the details of their employment at Reverse Rett. Adjustments in
remuneration for both parties are decided by the Board of Trustees.
Employment of Directors of the Charity is permitted by Article 6.4.2 of the Memorandum and Articles
of Association of the Charity which provides that Directors of the Charity may be employed providing
that the majority of Directors do not benefit in this way.
All remaining trustees give their time voluntarily and receive no benefits from the charity. Any expenses
reclaimed from the charity by these Trustees are set out in note 10 to the accounts.
16
Reverse Rett
Trustees. annual report
For the year ended 31st December 2021
Related parties and relationships with other oryanisations
Reverse Rett is a full member of the Association of Medical Research Charities (AMRC)
We work in partnership with the following organisations:
Rett Syndrome Research Trust (USA) -providing fijnding for UK based RSRT research projects
Rett Disorders Alliance UK -working on areas of common interest to benefit the UK Rett community
Rett UK -UK patient organisation focused on family support for those affected by Rett Syndrome
Opé Rett
Gudrun's Rett Syndrome Research Trust
Israel Rett Syndrome Research and Treatment Foundation
The followlng are Internatlonal oryanlsatlons from whom we have recelved donatlons durlng
the 2021 financial year:
Opé Rett
With special thanks to our industry partners:
GW Pharmaceuticals
Anavex Life Sciences Corp.
Taysha Gene Therapies
Neurogene Inc.
Risk management
During the annual in person board meeting 2021, the charity trustees considered the major risks to
which the charity is exposed.
These include but are not limited to:
Sudden major decrease in fundraising
Key personnel changes
Keeping a six-month reserve protects the charity in the short term from a major decrease in
fundraising which we have now experienced due to the Covid-19 outbreak.
The potential for key personnel changes will be reviewed on an ongoing basis. The charity is insured
against the loss of the Executive Director as recruitment for this post is likely to bring a significantly
increased cost for the charity. In 2022, Reverse Rett is working to broaden the management base to
deliver more pmtertion for the charity against the loss of key personnel.
17
Reverse Rett
Trustees. annual report
For the year ended 31st December 2021
Fundraising
Reverse Rett is registered with the Fundraising Regulator and considered to be
demonstrating commitment to good fundraising practice.
Reverse Rett is committed to following the Fundraising Regulator's Code of Fundraising Practice and the
Fundraising Promise and is permitted to use the Fundraising Regulator badge on all fundraising
materials.
There has been no failure to comply with the scheme or the standards ferred to in (l) above.
Reverse Rett's approach to fundraising is laid out in our Fundraising Principles and
Fundraising Policies for community fundraising and events which are sent out to all new
fundraisers.
The charity monitors activities carried out on behalf of the charity for the purpose off
fundraising through on-going interpersonal relationships with fundraisers and supporters of
whom we are aware.
The number of complaints received by the charity or a person acting on its behalf about
activities by the charity or by a person on behalf of the charity for the purpose of fundraising
during 2021 was O.
In 2021, the charity has updated the Rett Registry UK complete with a suite of privacy and data
protection tools to ensure that the privacy of all registrants and their families is secure. All
fundr8iser/supporter personal information is held on a secure third party platform called Donorfy.
Consents to hold lirnited information are secure.
Reverse Rett does not engage in telephone, mail or on the street cold solicitations and these
actions by another person on behalf of the charity are not permitted.
The charity has not acted as custodian trustee dLJring the reporting period.
18
ststement of responslbllltles of the trustees
The trustees {who are also direciors of Frs102 company charity for the purposes of company law) are
responsible for preparing the trustees. annual report and the financial statements in accordance with
applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted
Accounting Practice).
Company law 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 charitable company and of the incoming resources and
application of resources, including the income and expenditu, of the charitable company for that
period. In preparing these financial statements. the trustees are required to:
Selert suitable accounting policies and then apply them consistently
Observe the methods and principles in the Charities SORP
Make judgements and estimates that are reasonable and prudent
State whether applicable UK Accounting Standards and statements of recommended
prattice 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 operation
The trustees are responsible for keeping proper accounting records that disclose with reasonable
accuracy at any time the financial position of the charitable company ar)d enable them to ensure
that the financial statements comply with the Companies Act 2006. They are also responsible for
safeguarding the assets of the charitable company and hence for taking reasonable steps for the
prevention and detection of fraud and other irregularities.
In so far as the trustees are aware:
There is no relevant audit information of which the charitable company's auditors are unaware
The trustees have taken all steps that they ought to have taken to make themselves
aware of any relevant audit information and to establish that the auditors are aware of
that information
The trustees are responsible for the maintenance and integrity of the corporate and financial
information included on the charitable company's website. Legislation in the United Kingdom
governing the preparation and dissemination of financial statements may differ from legislation in
other jurisdirtions.
The trustees, annual report has been appmved by the trustees on 3110812022
and signed on their behalf by
John Sharpe
Chairman
19
## Independent Auditors’ Report to the Members and Trustees of Reverse Rett
## **Opinion**
We have audited the financial statements of Reverse Rett (the ‘charitable company’) for the year ended 31 December 2021, which comprise the Statement of Financial Activities (including the income and expenditure account), the Balance Sheet, the Statement of Cash Flows and the related notes. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice). In our opinion the financial statements:
- give a true and fair view of the state of the charitable company’s affairs as at 31 December 2021, and of its incoming resources and application of resources, including its income and expenditure, for the year then ended;
- have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice; and
- have been prepared in accordance with the requirements of the Companies Act 2006.
## **Basis for opinion**
We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the Auditor’s responsibilities for the audit of the financial statements section of our report. We are independent of the charitable company 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.
## **Conclusions relating to going concern**
In auditing the financial statements, we have concluded that the trustees’ use of the going concern basis of accounting in the preparation of the financial statements is appropriate.
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 charitable company'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.
Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.
## **Other information**
The trustees are responsible for the other information. The other information comprises the information included in the trustees’ annual report, other than the financial statements and our auditor’s report thereon. 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.
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 there is a material misstatement in the financial statements or a material misstatement of the
20
## Independent Auditors’ Report to the Members and Trustees of Reverse Rett
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 fact.
We have nothing to report in this regard.
## **Opinions on other matters prescribed by the Companies Act 2006**
In our opinion, based on the work undertaken in the course of the audit:
- the information given in the trustees’ report (incorporating the directors’ report) for the financial year for which the financial statements are prepared is consistent with the financial statements; and
- the trustees’ report has been prepared in accordance with applicable legal requirements.
## **Matters on which we are required to report by exception**
In the light of our knowledge and understanding of the charitable company and its environment obtained in the course of the audit, we have not identified material misstatements in the trustees’ report. We have nothing to report in respect of the following matters in relation to which the Companies Act 2006 requires us to report to you if, in our opinion:
- adequate accounting records have not been kept, or returns adequate for our audit have not been received from branches not visited by us; or
- the financial statements are not in agreement with the accounting records and returns; or
- certain disclosures of trustees’ remuneration specified by law are not made; or
- we have not received all the information and explanations we require for our audit; or
- the trustees were not entitled to prepare the financial statements in accordance with the small companies’ regime and take advantage of the small companies’ exemptions in preparing the Trustees’ Annual Report and from the requirement to prepare a strategic report.
## **Responsibilities of trustees**
As explained more fully in the trustees’ responsibilities statement set out on page 18, the trustees (who are also the directors of the charitable company for the purposes of company law) 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 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 charitable company’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 charitable company or to cease operations, or have no realistic alternative but to do so.
## **Auditor’s responsibilities for the audit of the financial statements**
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 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 accordance with ISAs (UK) will always detect a material misstatement when it exists. 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.
21
## Independent Auditors’ Report to the Members and Trustees of Reverse Rett
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. The specific procedures for this engagement and the extent to which these are capable of detecting irregularities, including fraud is detailed below:
- enquiry of management and those charged with governance around actual and potential litigation and claims.
- enquiry of the charity's staff, management and those charged with governance to identify any instances of non-compliance with laws and regulations.
- reviewing minutes of meetings of those charged with governance.
- reviewing financial statement disclosures and testing to supporting documentation to assess compliance with applicable laws and regulations.
- auditing the risk of management override of controls, including through testing journal entries and other adjustments for appropriateness, and evaluating the business rationale of significant transactions outside the normal course of business.
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 is available on the Financial Reporting Council’s website at: https://www.frc.org.uk/Our-Work/Audit/Audit-and-assurance/Standards-and-guidance/Standards-andguidance-for-auditors/Auditors-responsibilities-for-audit/Description-of-auditors-responsibilities-foraudit.aspx. This description forms part of our auditor’s report.
## **Use of our report**
This report is made solely to the charitable company’s members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006. Our audit work has been undertaken so that we might state to the charitable company’s members those matters we are required to state to them in an auditor’s 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 charitable company and the charitable company’s members as a body, for our audit work, for this report, or for the opinions we have formed.
Chinwe Jennifer Daniel FCCA DChA
Senior Statutory Auditor
## _for and on behalf of_
Slade & Cooper Limited Statutory Auditors Beehive Mill Jersey Street Manchester, M4 6JG Date: ____________
22
## Reverse Rett
## Statement of Financial Activities
(including Income and Expenditure account) for the year ended 31 December 2021
|Unrestricted
funds
Note
£
**Income from:**
Donations and legacies
3
345,684
Charitable activities:
4
326,458
**Total income**
**672,142**
**Expenditure on:**
Raising funds
5
155,571
Charitable activities:
6
645,369
**Total expenditure**
**800,940**
8**(128,798)**
Transfer between funds
-
**Net movement in funds for the year**
**(128,798)**
**Reconciliation of funds**
Total funds brought forward
345,524
**Total funds carried forward**
**216,726**
**Net income/(expenditure) for the**
**year**|Restricted
funds
£
8,000
36,152
**44,152**
-
52,403
**52,403**
**(8,251)**
-
**(8,251)**
85,430
**77,179**|Total funds
2021
£
353,684
362,610
**716,294**
155,571
697,772
**853,343**
**(137,049)**
-
**(137,049)**
430,954
**293,905**|_Total funds_
_2020_
_£_
_357,458_
_293,966_|
|---|---|---|---|
||||**_651,424_**|
||||_110,401_
_569,000_|
||||**_679,401_**|
||||**_(27,977)_**
_-_|
||||**_(27,977)_**
_458,931_|
||||**_430,954_**|
The statement of financial activities includes all gains and losses recognised in the year. All income and expenditure derive from continuing activities.
23
## Reverse Rett Company number 07278507
## Balance sheet as at 31 December 2021
|Note
£
£
**Fixed assets**
Tangible assets
12
2,155
**Total fixed assets**
**2,155**
**Current assets**
Debtors
13
50,803
Cash at bank and in hand
345,924
**Total current assets**
**396,727**
**Liabilities**
Creditors: amounts falling
due in less than one year
14
(104,977)
**Net assets**
**293,905**
**The funds of the charity:**
Restricted income funds
15
77,179
Unrestricted income funds
16
216,726
**Total charity funds**
**293,905**
2021|_£_
_£_
_3,504_
**_3,504_**
_109,163_
409,978
**_519,141_**
_(91,691)_
**_430,954_**
_85,430_
_345,524_
**_430,954_**
_2020_|_£_
_£_
_3,504_
**_3,504_**
_109,163_
409,978
**_519,141_**
_(91,691)_
**_430,954_**
_85,430_
_345,524_
**_430,954_**
_2020_|
|---|---|---|
|||**_3,504_**|
|||**_430,954_**|
|||_85,430_
_345,524_|
|||**_430,954_**|
These accounts are prepared in accordance with the special provisions of part 15 of the Companies Act 2006 relating to small companies and constitute the annual accounts required by the Companies Act 2006 and are for circulation to members of the company.
The notes on pages 26 to 39 form part of these accounts.
Approved by the trustees on 31/08/2022 and signed on their behalf by:
Helen Simmonds (Vice-Chair)
24
Reverse Rett
## Statement of Cash Flows for the year ending 31 December 2021
|Note
2021
£
**Cash provided by/(used in) operating activities**
19
**(64,054)**
(64,054)
Cash and cash equivalents at the beginning of the year
409,978
**Cash and cash equivalents at the end of the year**
**345,924**
Increase/(decrease) in cash and cash
equivalents in the year|_2020_
_£_
**_47,353_**|
|---|---|
||_44,455_
_365,123_|
||**_409,578_**|
25
Reverse Rett
Notes to the accounts for the year ended 31 December 2021
## **1 Accounting policies**
The principal accounting policies adopted, judgments and key sources of estimation uncertainty in the preparation of the financial statements are as follows:
## **a Basis of preparation**
The financial statements have been prepared in accordance with 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), second edition - October 2019 (Charities SORP (FRS 102)), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Companies Act 2006 and UK Generally Accepted Accounting Practice.
Reverse Rett meets the definition of a public benefit entity under FRS102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note.
## **Reconciliation with previous Generally Accepted Accounting Practice**
In preparing the accounts, the trustees have considered whether in applying the accounting policies required by FRS 102 and the Charities SORP FRS 102 the restatement of comparative items was required. No Restatements were required.
## **b Preparation of the accounts on a going concern basis**
The trustees consider that there are no material uncertainties about the charitable company's ability to continue as a going concern.
The trustees have made no key judgments which have a significant effect on the accounts.
The trustees do not consider that there are any sources of estimation uncertainty at the reporting date that have a significant risk of causing a material adjustment to the carrying amount of assets and liabilities within the next reporting period.
26
Reverse Rett
Notes to the accounts for the year ended 31 December 2021 (continued)
## **c Income**
Income is recognised when the charity has entitlement to the funds, any performance conditions attached to the item(s) of income have been met, it is probable that the income will be received and the amount can be measured reliably.
Income from government and other grants, whether ‘capital’ grants or ‘revenue’ grants, is recognised when the charity has entitlement to the funds, any performance conditions attached to the grants have been met, it is probable that the income will be received and the amount can be measured reliably and is not deferred.
For legacies, entitlement is taken as the earlier of the date on which either: the charity is aware that probate has been granted, the estate has been finalised and notification has been made by the executor(s) to the charity that a distribution will be made, or when a distribution is received from the estate. Receipt of a legacy, in whole or in part, is only considered probable when the amount can be measured reliably and the charity has been notified of the executor’s intention to make a distribution. Where legacies have been notified to the charity, or the charity is aware of the granting of probate, and the criteria for income recognition have not been met, then the legacy is a treated as a contingent asset and disclosed if material.
Income received in advance of a provision of a specified service is deferred until the criteria for income recognition are met.
## **d Donated services and facilities**
Donated professional services and donated facilities are recognised as income when the charity has control over the item, any conditions associated with the donated item have been met, the receipt of economic benefit from the use by the charity of the item is probable and that economic benefit can be measured reliably. In accordance with the Charities SORP (FRS 102), general volunteer time is not recognised; refer to the trustees’ annual report for more information about their contribution.
On receipt, donated professional services and donated facilities are recognised on the basis of the value of the gift to the charity which is the amount the charity would have been willing to pay to obtain services or facilities of equivalent economic benefit on the open market; a corresponding amount is then recognised in expenditure in the period of receipt.
## **e Interest receivable**
Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the charity; this is normally upon notification of the interest paid or payable by the Bank.
27
Reverse Rett
Notes to the accounts for the year ended 31 December 2021 (continued)
## **f Fund accounting**
Unrestricted funds are available to spend on activities that further any of the purposes of charity.
Designated funds are unrestricted funds of the charity which the trustees have decided at their discretion to set aside to use for a specific purpose.
Restricted funds are donations which the donor has specified are to be solely used for particular areas of the charity’s work or for specific projects being undertaken by the charity.
## **g Expenditure and irrecoverable VAT**
Expenditure is recognised once there is a legal or constructive obligation to make a payment to a third party, it is probable that settlement will be required and the amount of the obligation can be measured reliably.
Irrecoverable VAT is charged as a cost against the activity for which the expenditure was incurred.
## **h Allocation of support costs**
Support costs are those functions that assist the work of the charity but do not directly undertake charitable activities. Support costs include back office costs, finance, personnel, payroll and governance costs which support the charity's programmes and activities.
## **i Operating leases**
Operating leases are leases in which the title to the assets, and the risks and rewards of ownership, remain with the lessor. Rental charges are charged on a straight line basis over the term of the lease.
## **j Tangible fixed assets**
Individual fixed assets costing £1,000 or more are capitalised at cost and are depreciated over their estimated useful economic lives on a straight line basis as follows:
Office equipment 25% Computer equipment 25%
28
Reverse Rett
Notes to the accounts for the year ended 31 December 2021 (continued)
## **k Debtors**
Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due.
## **l Cash at bank and in hand**
Cash at bank and cash in hand includes cash and short term highly liquid investments with a short maturity of three months or less from the date of acquisition or opening of the deposit or similar account.
## **m Creditors and provisions**
Creditors and provisions are recognised where the charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provisions are normally recognised at their settlement amount after allowing for any trade discounts due.
## **n Financial instruments**
The charity only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value with the exception of bank loans which are subsequently measured at amortised cost using the effective interest method.
## **o Pensions**
Employees of the charity are entitled to join a defined contribution ‘money purchase’ scheme. The charity’s contribution is restricted to the contributions disclosed in note 9. There were no outstanding contributions at the year end.
## **2 Legal status of the charity**
The charity is a company limited by guarantee registered in England and Wales and has no share capital. In the event of the charity being wound up, the liability in respect of the guarantee is limited to £1 per member of the charity. The registered office address is disclosed on page 1.
29
Reverse Rett
## Notes to the accounts for the year ended 31 December 2021 (continued)
## **3 Income from donations and legacies**
|Unrestricted
Restricted
£
£
Donations
293,495
-
Grants -
Sylvia Aiken Trust
3,000
-
The Patrick and Helena Trust
-
-
Covid Response and JRS
16,189
-
HG Foundation
2,000
-
Childwick Trust
15,000
-
GW Pharmaceuticals
10,000
-
Exceed Trust
1,000
-
The Lawson Trust
5,000
-
Pears Grant
-
8,000
**Total**
345,684
8,000
**_Income from donations and legacies - previous year_**
_Unrestricted_
_Restricted_
_£_
_£_
_Donations_
_277,897_
_21,075_
_Grants_
Sylvia Aiken Trust
_6,000_
_-_
The Patrick and Helena Trust
_10,000_
_-_
Covid Response and JRS
_39,311_
_-_
Others
_600_
_2,575_
_-_
_-_
**_Total_**
_333,808_
_23,650_|Total 2021
£
293,495
3,000
-
16,189
2,000
15,000
10,000
1,000
5,000
8,000|
|---|---|
||353,684|
||_Total 2020_
_£_
_298,972_
_6,000_
_10,000_
_39,311_
_3,175_
_-_|
||_357,458_|
30
## Reverse Rett
## Notes to the accounts for the year ended 31 December 2021 (continued)
## **4 Income from charitable activities**
|Unrestricted
£
The Big Give
110,788
London Event
153,718
MECP2 Fund
-
Family events
7,048
Anavex Germany GmbH
22,335
Gift Aid
31,693
Other income
876
**Total**
326,458
**_Income from charitable activities - previous year_**
_Unrestricted_
_£_
_The Big Give_
_82,502_
_London Event_
_91,317_
_MECP2 Fund_
_665_
_Family events_
_5,806_
_Newron Pharmacy_
_8,874_
_Parent 2 Parent programme_
_-_
_Gift Aid_
_71,024_
_Other income_
_2,512_
**_Total_**
_262,700_
**5**
**Cost of raising funds**
Staff costs
Fundraiser's fees
Event costs|Restricted
£
-
-
15,762
-
20,390
-
-
36,152
_Restricted_
_£_
_-_
_-_
_12,960_
_-_
_3,633_
_14,529_
_-_
_144_
_31,266_
2021
£
68,177
3,048
84,346
155,571|Total 2021
£
110,788
153,718
15,762
7,048
42,725
31,693
876|
|---|---|---|
|||362,610|
|||_Total 2019_
_£_
_82,502_
_91,317_
_13,625_
_5,806_
_12,507_
_14,529_
_71,024_
_2,656_|
|||_293,966_|
|||_2020_
_£_
_63,456_
_5,139_
_41,806_|
|||_110,401_|
All expenditure on cost of raising funds is unrestricted.
31
Reverse Rett
## Notes to the accounts for the year ended 31 December 2021 (continued)
## **6 Analysis of expenditure on charitable activities**
|Staff costs
Travel and accommodation
Clinical trial expense
Parent 2 Parent programme*
CIPP Rett Centre
MECP2
Transfer to Rett Syndrome
Research Trust USA
Governance costs (see note 7)
Support costs (see note 7)|Unrestricted
£
53,765
100,000
348
-
-
315,836
-
5,520
169,900
645,369|Restricted
£
-
-
-
20,390
17,529
-
14,484
-
-
52,403|Total 2021
£
53,765
100,000
348
20,390
17,529
315,836
14,484
5,520
169,900|
|---|---|---|---|
||||697,772|
* The stated amount includes staff cost of £13,428.
## _**Analysis of expenditure on charitable activities - previous year**_
|_Staff costs_
_Travel and accommodation_
_Kings College Grant_
_Clinical trial expense_
_Rett disorders alliance_
_Parent 2 Parent programme_
_CIPP Rett Centre_
_MECP2_
_Governance costs (see note 7)_
_Support costs (see note 7)_
_Transfer to Rett Syndrome_
_Research Trust USA_|_Unrestricted_
_£_
_64,253_
_445_
_1,688_
_-_
_-_
_-_
_-_
_311,137_
_-_
_5,640_
_147,914_
_531,077_|_Restricted_
_£_
_-_
_-_
_-_
_-_
_11,247_
_-_
_1,051_
_-_
_25,625_
_-_
_-_
_37,923_|_2,020_
_£_
_64,253_
_445_
_1,688_
_-_
_11,247_
_-_
_1,051_
_311,137_
_25,625_
_5,640_
_147,914_|
|---|---|---|---|
||||_569,000_|
32
## Reverse Rett
## Notes to the accounts for the year ended 31 December 2021 (continued)
## **7 Analysis of governance and support costs**
|Office rental cost
Staff costs
Office costs
Audit fees
Accountancy services
Legal and professional
Advertising and marketing
**8**
**Net income/(expenditure) for the year**
This is stated after charging/(crediting):
Depreciation
Operating lease rentals:
Property
Other
Auditor's remuneration - audit fees
Auditor's remuneration - accountancy fees|Support
£
10,530
97,208
51,506
-
-
9,360
1,296
169,900
2021
£
1,349
-
2,460
3,000
1,600|Governance
£
-
-
-
3,500
2,020
-
-
5,520
_2020_
_£_
_1,349_
_-_
_2,568_
_3,000_
_1,600_|_Total 2021_
£
10,530
97,208
51,506
3,500
2,020
9,360
1,296|
|---|---|---|---|
||||175,420|
|||||
33
Reverse Rett
## Notes to the accounts for the year ended 31 December 2021 (continued)
## **9 Staff costs**
Staff costs during the year were as follows:
|Wages and salaries
Social security costs
Pension costs
**Allocated as follows:**
Cost of raising funds
Charitable activities
Support costs|2021
£
206,210
18,525
7,843
232,578
68,177
67,193
97,208
232,578|_2020_
_£_
_198,922_
_18,126_
_7,356_|
|---|---|---|
|||_224,404_|
|||_63,456_
_64,253_
_96,695_|
|||_224,404_|
No employees has employee benefits in excess of £60,000 (2020: Nil).
The average number of staff employed during the period was 7 (2020: 7).
The key management personnel of the charity comprise the trustees and the Chief Executive Officer. The total employee benefits of the key management personnel of the charity were £54,453 (2020: £53,040).
## **10 Trustee remuneration and expenses, and related party transactions**
Two of the trustees Rachael Stevenson (Chief Executive) and Andrew Stevenson received remuneration totalling £95,066 during the year (2020:£91,831).
No trustee received travel and subsistence expenses during the year. (2020:nil).
Aggregate donations from related parties were £35,000 (2020: £44,650).
There are no donations from related parties which are outside the normal course of business and no restricted donations from related parties.
The Chief Executive and a director of Reverse Rett, Rachael Stevenson is on the Board of Rett Syndrome Research Trust USA. Monica Coenraads who is also a director of Reverse Rett sits on the Board of Rett Syndrome Research Trust USA.
Reverse Rett made charitable grant to Rett Syndrome USA of £100,000 this year. (2020: £445).
No trustee or other person related to the charity had any personal interest in any contract or transaction entered into by the charity, including guarantees, during the year (2020: nil).
34
Reverse Rett
## Notes to the accounts for the year ended 31 December 2021 (continued)
## **11 Corporation tax**
The charity is exempt from tax on income and gains falling within Chapter 3 of Part 11 of the Corporation Tax Act 2010 or Section 256 of the Taxation of Chargeable Gains Act 1992 to the extent that these are applied to its charitable objects. No tax charges have arisen in the charity.
## **12 Fixed assets: tangible assets**
|**Cost**
Additions
Disposals
**Depreciation**
Charge for the year
Disposals
**Net book value**
_At_
_31_
_December_
_2020_
At 1 January 2021
At
31
December
2021
At 1 January 2021
At
31
December
2021
At
31
December
2021|Computer
equipment
£
7,525
-
-|
|---|---|
||7,525|
||4,021
1,349
-|
||5,370|
||2,155|
||_3,504_|
35
## Reverse Rett
## Notes to the accounts for the year ended 31 December 2021 (continued)
|**13**
**Debtors**
Other debtors
Prepayments and accrued income
Gift aid debtor
Big Give debtor
**14**
**Creditors: amounts falling due within one year**
Trade creditors
Other creditors and accruals
Taxation and social security costs|2021
£
10,837
28,208
1,758
10,000
50,803
2021
£
16,297
74,895
13,785
104,977|_2020_
_£_
_6,300_
_26,672_
_25,956_
_50,235_|
|---|---|---|
|||_109,163_|
|||_2020_
_£_
_2,351_
_78,956_
_10,384_|
|||_91,691_|
36
## Reverse Rett
## Notes to the accounts for the year ended 31 December 2021 (continued)
## **15 Analysis of movements in restricted funds**
|Pears Grant
Total
_Total_
_Rett disorder_
_alliance_
_Use in_
_Parent 2 Parent_
_Programme_
_Clinical_
_Research Funds_
Anavex
Germany GmbH
_MECP2_
_Duplication_
**_Previous_**
**_reporting period_**
_MECP2_
Duplication
Rett disorder
alliance
Use in
Farringdon
Parent 2 Parent
Programme
Clinical
Research Funds|Balance at 1
January 2021
£
11,090
4,861
200
20,585
48,694
-
-
85,430
_Balance at 1_
_January 2020_
_£_
_2,680_
_4,861_
_200_
_7,107_
_37,589_
_52,437_
|Income
£
15,762
-
-
-
-
20,390
8,000
44,152
_Income_
_£_
_34,035_
_-_
_-_
_14,529_
_6,352_
_54,916_|Expenditure
£
(14,484)
-
-
(17,529)
-
(20,390)
-
(52,403)
_Expenditure_
_£_
_(25,625)_
_-_
_-_
_(1,051)_
_(11,247)_
_(37,923)_|Transfers
£
-
-
-
-
-
-
_Transfers_
_£_
_-_
_-_
_-_
_-_
_16,000_
_16,000_|As at 31
December
2021
£
12,368
4,861
200
3,056
48,694
-
8,000|
|---|---|---|---|---|---|
||||||77,179|
||||||_31_
_December_
_2020_
_£_
_11,090_
_4,861_
_200_
_20,585_
_48,694_|
||||||_85,430_|
## **Name of restricted fund Description, nature and purposes of the fund**
MECP2
The _MECP2_ Duplication Fund at Reverse Rett is a restricted fund. The fund exclusively supports projects devoted to the study and means of treatment of _MECP2_ Duplication/Triplication Syndrome. 100% of funds raised and contributed to Reverse Rett by families of children with _MECP2_ Duplication Syndrome and their supports in the UK are committed to _MECP2_ Duplication projects via RSPT US.
37
Reverse Rett
## Notes to the accounts for the year ended 31 December 2021 (continued)
Parent 2 Parent Reverse Rett Parent 2 Parent offers grants parent to parent support as a resource to families of newly diagnosed or struggling children with Rett Syndrome and related _MECP2_ disorders. Through a one to one 'match', experienced parents provide emotional support to families and assist then in finding information and resources.
The Reverse Rett Parent 2 Parent project is now housed under Rett Connect umbrella. Please see here for more details.
https://www.reverserett.org.uk/rett-connect/
This is a designated fund which will support UK based clinical research and the Clinical Research implementation of treatment for Rett Syndrome and related _MECP2_ Disorders in Fund the UK.
## **16 Analysis of movement in unrestricted funds**
|General fund
**_Previous_**
**_reporting period_**
_General fund_|Balance at 1
January 2021
£
345,524
345,524
_Balance at 1_
_January 2020_
_£_
_406,494_
_406,494_|Income
£
672,142
672,142
_Income_
_£_
_596,508_
_596,508_|Expenditure
£
(800,940)
(800,940)
_Expenditure_
_£_
_(641,478)_
_(641,478)_|Transfers
£
-
_Transfers_
_£_
_(16,000)_
_(16,000)_|As at 31
December
2021
£
216,726|
|---|---|---|---|---|---|
||||||216,726|
||||||_As at 31_
_December_
_2020_
_£_
_345,524_|
||||||_345,524_|
## **Name of unrestricted Description, nature and purposes of the fund**
General fund The free reserves after allowing for all designated funds
38
## Reverse Rett
## Notes to the accounts for the year ended 31 December 2021 (continued)
## **17 Analysis of net assets between funds**
|Tangible fixed assets
Net current assets/(liabilities)
Total|General
fund
£
2,155
214,571
216,726|Designated
funds
£
-
-
-|Restricted
funds
£
-
77,179
77,179|Total
£
2,155
291,750|
|---|---|---|---|---|
|||||293,905|
## **18 Operating lease commitments**
The charity's total future minimum lease payments under non-cancellable operating leases is as follows for each of the following periods:
|Less than one year
One to five years|2021
_2020_
£
_£_
-
_-_
-
_-_
-
_-_
Property|2021
_2020_
£
_£_
2,460
_2,568_
4,410
_6,870_
6,870
_9,438_
Equipment|2021
_2020_
£
_£_
2,460
_2,568_
4,410
_6,870_
6,870
_9,438_
Equipment|
|---|---|---|---|
||||_9,438_|
## **19 Reconciliation of net movement in funds to net cash flow from operating activities**
|**Net income/(expenditure) for the year**
**Adjustments for:**
Depreciation charge
Decrease/(increase) in debtors
Increase/(decrease) in creditors
**Net cash provided by/(used in) operating**|2021
£
(137,049)
1,349
58,360
13,286
(64,054)|_2020_
_£_
_(27,977)_
_1,349_
_(2,388)_
_76,369_|
|---|---|---|
|||_47,353_|
39