October 2021
CONTENTS Welcome Letter
Our new strategy 2021-2016 Taysha Gene Therapies Update CIPP Rett Centre Review Meet the Research Advisory Board Rett Registry UK - New app coming soon! October Bitesize and Family Forum Taysha Gala Press Release Inspirational Fundraisers -
Reverse Rett Statham Link 1F Lancastrian Office Centre Talbot Road, Old Trafford Manchester M32 0FP
Vincent Johnsson The Big Give Christmas Challenge 2021 Gift in wills 365 Club
0161 413 0585 info@reverserett.org.uk www.reverserett.org.uk TRUSTEES Chair: John H Sharpe Vice-Chair: Helen Simmonds STAFF TEAM CEO: Rachael Stevenson Clinical Trial Lead/Supporter Care: Andy Stevenson Finance: Rashida Hossain Events & Outreach Lead: Beth Johnsson Design/Marketing: Wesley Havill Patient Registry Co-ordinator: Ewelina Wasowska Fundraising special events: Hazel Beiny
The views expressed herein do not necessarily represent the views of the editor or of Reverse Rett Board of Trustees. Parts of this publication may be reproduced with permission, please email rachael@reverserett.org.uk
Reverse Rett Matters Designer: Wesley Havill Edited by: Rachael Stevenson CHANGE IS WITHIN REACH
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Hello and welcome to the last issue of Reverse Rett Matters for 2021.
In this edition of the newsletter, we’re also sharing with you our plans for Rett Syndrome Awareness month in October and some of the more strategic and bureaucratic work we are doing behind the scenes in developing the new Rett Registry UK, proposed continuation funding of the CIPP Rett Centre and issues around early diagnosis. We hope you find this interesting.
At last, it feels like life as we knew it before the pandemic is resuming which is a welcome relief in terms of the work we are trying to do at Reverse Rett. Despite this, we recognise that things haven’t eased up for many individuals with complex health needs and their families, including many people living with Rett Syndrome. It has been brilliant to see pictures of our children and young people going back to school and college where possible. This tentative return to ‘normal’ and the knowledge that things have been even more difficult than usual for so many families, spurs the team on in the work we are doing to ensure that treatments and a cure for Rett Syndrome can be delivered as quickly as possible.
Following a challenging 18 months responding to the pandemic, we are focused on the recovery of all our programs and the wellbeing of our small staff team at Reverse Rett. The organisation is only as strong as the people who make it happen which directly impacts the rate at which we can bring about positive change for everyone affected by Rett Syndrome. Keep an eye out for our team’s contributions to the ‘Do One Thing’ campaign for October awareness and please, do consider supporting the campaign yourself by picking just one thing to do and then sharing it as widely as possible.
Earlier this month, we restarted Rett Connect programs including Bitesize and Family Forum sessions. We’re excited about the sessions planned for October and looking forward to wrapping those up in time for us to fully focus on our biggest fundraising push of the year, the Reverse Rett Winter Gala, sponsored by Taysha Gene Therapies, and this year’s Big Give Christmas Challenge.
Despite everything that has happened in the last 18 months, we have never been in a more promising position as a community, with gene therapy trials projected to start before the end of 2021. Please help us celebrate and bring attention to that progress throughout October. With much appreciation for your ongoing support.
The Winter Gala is taking double the organisational effort this year because in effect, we have been planning two events, one live and one virtual, just in case the live event does not come to fruition. Although Covid may have thwarted live events during the last 18 months, it has not stopped the research projects we fund.
Rachael Stevenson CEO Reverse Rett
Rachael x
We rely heavily on income from both the Gala and the Big Give Christmas Challenge, so come what may with the pandemic, these shows must go on!
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After all the disruptions during the Pandemic it was delightful to see our children heading back to school at the end of the Summer Holidays.
Harley
Elsie
Ellie
Amelia
Eliza
Lily
Romi
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In the last week, we have published two community statements from Taysha Gene Therapies on the Reverse Rett website. Taysha Rett Syndrome Community Letter
Taysha Gene Therapies Community Letter
The first community letter explains that Taysha has been granted EU orphan drug designation for their Rett Syndrome gene replacement product TSHA-102. Orphan drug designation allows faster development of a specific product, typically for rare diseases which are life threatening or chronically debilitating. The letter goes on to state that the company is on target for their projected IND/CTA filing at the end of 2021. This is the precursor to initiating a clinical trial via both FDA and EMA RA Session II, President, Founder and Chief Executive Officer of Taysha said:
The receipt of orphan drug designation from the European Commission represents an important regulatory milestone that has the potential to expedite the global clinical development of TSHA-102, a one-time gene therapy with disease modifying potential. Promising preclinical data demonstrate that TSHA-102’s novel self-regulatory feedback mechanism, miRARE, has the ability to regulate MECP2 expression in a genotypedependent manner on a cell-by-cell basis. We are highly encouraged that this novel treatment approach can help effectively address a disease that has historically been difficult to treat, and we look forward to submitting an IND/CTA in the second half of this year and initiating a Phase 1/2 clinical trial by year-end.
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The second letter published on 25th September 2021, provides information about a virtual education event on Rett Syndrome for the investment community. Through the webinar, Taysha were able to give investors a thorough overview of Rett Syndrome, from the clinician perspective, with Dr Jeff Neul, MD, PhD, from the scientific perspective, from Taysha’s Chief Scientific Advisor, Dr Steve Gray and a powerful parent/patient perspective from RSRT’s Monica Coenraads.
Dr Suyash Prasad, Taysha’s Chief Medical Officer also provided further information about plans for the first clinical trial. Subject to approval from the FDA, Taysha plans to enrol patients with Rett Syndrome age 18 or over for the first trial of TSHA-102 and then move to younger age groups.
You can access the full presentation here
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CIPP RETT REVIEW
CIPP Rett Centre: How Covid-19 has affected their work throughout 2020 and into 2021 Reverse Rett started funding the CIPP Rett Centre in September 2019. Little did any of us know what lay ahead with Covid.
This meant that they were able to continue to evaluate and treat patients, to work with the clinical teams supporting families locally and to provide effective support for parents and carers, both on an emotional and practical level.
Very quickly after the Centre opened, the pandemic changed everything. When the first national lockdown was implemented, drastic measures had to be taken to keep the team functioning, the research progressing and clinical care for people with Rett Syndrome in place.
Continuation of the clinical work and ongoing funding has meant, too, that research progress has not stalled. The CIPP Rett team has produced six papers since September 2019 with five in development. Professor Santosh and colleagues have spoken at 8 online workshops for families and professionals including sessions by Rett UK as well as Reverse Rett. As of today, the CIPP Rett Centre is remotely monitoring 146 UK children and adults with Rett Syndrome.
In the first several months of the pandemic, many research organisations paused their work which means funding could be paused too. But lockdown had a tremendous impact on people with Rett Syndrome and their families. Many families were shielding children or adults with Rett Syndrome at home with no external support; no respite, no carers coming in and no school, therapies or other statutory services available.
But despite their swift response to the changes brought about by the pandemic, the CIPP Rett team have been disrupted in their work in other ways. In the wake of the national lockdowns (which never really had any intermission for people shielding), clinical trials were terminated or paused as were individual trials or pilot studies of existing and emerging medications planned by the team. Focus necessarily shifted to managing clinical crises and supporting families with difficult decisions around Covid care. The plans the CIPP Rett Centre team had in place have been significantly impacted by the pandemic, social distancing and the subsequent effect of all this on patients and families.
Referrals to the CIPP Rett Centre went up 70% in the first few months of the first lockdown, with reports of patients suffering increased agitation, anxiety and other emotional and behavioural issues. Families were under intense pressure as sole carers, often having to seek support re issues around employment etc due to the health needs of the patient. At this time, when so many other services ceased working with patients and families completely, the CIPP Rett Centre shifted to providing assessments and ongoing consultation for patients and families remotely.
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CIPP Rett Centre 2 year review
Internal triage - The charity checks eligibility of the research applications to ensure they are within scope and fit with the organisation's Research Strategy.
As core funder for the CIPP Rett Centre, Reverse Rett holds bi-annual reviews of the work of the Centre with an annual review due every September.
External Peer Review - Experts from around the world are asked to provide written comments on the research application. The number of written reviews needs to be proportionate to both the size and the materiality of the award. Where substantial funding is being applied for (in relation to the charity’s research spend), AMRC members generally require at least two written reviews.
The Board of Reverse Rett have decided this year, it would be prudent whilst reviewing the work of the Centre, to also review a proposal for continuation funding of this work, due to the impact of the pandemic on the plans outlined in the original proposal.
Research Advisory Board (sometimes called a research review committee or scientific advisory board etc.) - Members of the Research Advisory Board aim to help Reverse Rett by making a rational and independent evaluation of the merits of proposals. Their brief is to assess whether the proposed investment is likely to lead to significant developments and improvements in care for patients with Rett Syndrome and whether the research lies within the mission and objectives of Reverse Rett. They are a key part of regular monitoring and evaluation of progress being made by the project.
How will we do this? As a full member of the Association of Medical Research Charities, Reverse Rett has a formal peer review process in place to help us evaluate the work we fund. * AMRC members undertake peer review according to AMRC’s five principles of peer review: accountability, balance, independence, rotation and impartiality. Whilst specific peer review processes may differ from one charity to another, depending on the size of the charity, its structure, the degree of inhouse expertise, the grant and the funding mechanism, all AMRC charities, regardless of size, seek external expert review. Below is a brief overview of the peer review process at Reverse Rett.
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RAB engage in dialogue
with the PI and team,
addressing concerns and ambiguities associated with the proposal
RAB write impartial funding
recommendations aligned
to Charity objectives as to the expected merits or issues of the proposed work
RAB report received. If
significant issues are
found Reverse Rett can
work with the PI to address and rectify followed by RAB review
Strong proposals that
have peer review, RAB
and RR team backing are
presented to board of trustees for final investment decision
*This specifically applies to the UK clinical research we fund. The laboratory research which we financially support through our partnership with Rett Syndrome Research Trust US is evaluated and monitored through their peer review processes.
We have now received the CIPP Rett Centre’s 2 year report and proposal for continuation funding and so the review process begins. We hope to have a determination to share with you by the end of December 2021.
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TheTrustees make the final decision on whether the charity should award funding to the research application.
RAB members review all
written material off-line
prior to meeting and build a list of outstanding questions
Peer reviews collated
and sent along with the
original proposal to the RAB for independent review
Proposals sent for peer-
review to multiple subject matter experts in fields that are relevant to the proposal
Proposals received by
Reverse Rett according to published submission criteria
seetsurT fo draoB tteR esreveR
Members of the Research Review Board aim to help Reverse Rett (RR) by making a rational,
independent evaluation of the merits of proposals for Single Institute Funding designed to
make progress in developing new clinical treatment options for Rett Syndrome patients. Their brief is to assess whether the proposed investment is likely to lead to significant developments and improvements in care for patients with Rett Syndrome and whether the research lies within the mission and objectives of Reverse Rett. In addition, they will be a key part of the regular monitoring and evaluation of the progress being made by the Institute.
draoB yrosivdA hcraeseR
The charity checks eligibility of the
research applications to ensure they
are within scope and fit with the organisation's Research Strategy.
egairT lanretnI
Experts from around the world are asked to provide
written comments on the research application. The
number of written reviews needs to be proportionate to
both the size and the materiality of the award. Where substantial funding is being applied for (in relation to the charity’s research spend), AMRC members generally require at least two written reviews.
weiveR reeP lanretxE
ssecorp weiver gnidnuf hcraeseR :tteR esreveR
MEET OUR RAB Dr. David Greatrex Chair
Enabling Units Data Science Lead at AstraZeneca
Dr. Munaf Ali
Independent Drug Development and Regulatory Affairs Consultant
Professor Gunter Loffler
Dr. Jatinder Singh
Head of Department Department of Vision Sciences
Independent Scientific Advisor
John H. Sharpe
Joanna Tomlin
Reverse Rett Chairman Non-voting member
Patient Voice
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RESEARCH ADVISORY BOARD
Dr. Ram Kumar, MA MB BChir MRCP (UK) Consultant Paediatric Neurologist, Alder Hey Children’s Hospital
Dr. Mark E.S.Bailey
Senior Lecturer in Molecular Genetics, School of Life Sciences, CMVLS, University of Glasgow
Mrs Louise Wainwright Animal Welfare Officer, Deputy Bioscience Support Facility Manager, Nottingham Trent University
REVERSE RETT MATTERS
RETT REGISTRY UK Reverse Rett started the Rett Registry UK back in 2014. During 2020 and 2021, we have put a lot of time and resources into building the existing Registry into an interactive app which will help us to recruit more effectively for clinical trials and more efficiently manage the clinical trial support services we provide. But we’ve also made some extra effort to make the Registry a useful tool for UK families and carers of people with Rett Syndrome as well. The new app has a comprehensive suite of features to help you manage day to day life and all the associated bureaucracy of supporting a child or adult with Rett as well. The new app will enable families to: Control their own records with inbuilt security at the heart of the app Allow multiple caregivers to connect through one individual record Provide expressions of interests for upcoming clinical trials Complete, download and share hospital passport Connect with each other through a community forum We hope these features will make life so much easier for those who use it and we can’t wait to share it with you. If you're already signed up to Reverse Rett's Patient Registry, there's no need to do anything - you'll receive an automatic invite when the new app is ready. If you're not signed up, register today and we'll be in touch!
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CONNECT
OCTOBER 2021
OCTOBER BITESIZE Following some insightful sessions in September on the topic of participating in clinical research, we’re excited to have now also kicked off our Bitesize sessions for October, in collaboration with Rett UK, as part of Rett Syndrome Awareness Month. Last week a highly experienced parent-panel and SALT discussed nutrition and blended diet. On October 15th Clinical Consultant Psychologist Dr Ruksana Ahmed will be addressing anxiety in Rett Syndrome and further sessions in October will cover transition into adulthood. You can watch previous Bitesize sessions on our YouTube channel and find full details of upcoming sessions on our Informational Events page here.
FAMILY FORUM After only receiving Penny's diagnosis earlier this year I at first thought it would be too soon to join the family forum. But I’m so glad I did, being with (even if only virtually) other parents who understand is a lifeline! I would like to say a massive thank you to Reverse Rett for these sessions and especially the ladies who I met there. After the forum I emailed Penny’s consultant about SIADH and vitamin D deficiency as she hasn’t had blood tests since feb 2020 and the same day I had a path to take and have her bloods done so we can have a baseline for her and hopefully prevent rather than treat any deficiencies. Thanks to the forum I will be making sure that the most experienced person takes her bloods. If you have any reservations about joining the forum, please be assured you won’t be disappointed and you will come away feeling so much stronger and armed with knowledge for your child.
The next Family Forum takes place on Wednesday 13th October at 8pm. Details and registration here.
Helen Morris, Penny's mum
This project has philanthropic support from the Pears Foundation, for frontline organisations and their communities, and is funded as part of Government’s £750m charities package. Reverse Rett funding for this was £600 for editing from Jan-March 2021 for which we are extremely grateful.
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WINTER GALA NEWS! The 11th annual Reverse Rett Winter Galal will take place on Friday 3rd December at Church House, Westminster AND online, and we are especially delighted to have the support and sponsorship of Taysha Gene Therapies for this year’s event.
“The passion and dedication of the patient community drives truly innovative science and tremendous progress toward a treatment for individuals with Rett Syndrome. Taysha is grateful to be a part of such an amazing community.”
REVERSE RETT
Emily McGinnis, MPH, Chief Patient Officer and Head of Government Affairs, Taysha Gene Therapies. You can read the full press release about Taysha’s support and the Gala itself here. We’re also hugely excited that, for the first time ever, you’ll be able to be part of this elegant event even if you can’t be there in person! The 2021 Winter Gala will be streamed live into your homes, with various ticket packages on offer to allow you to create a very special big night in of your own. Choose from wine-tasting, whisky-tasting, beer1. tasting or a pamper masterclass, plus fabulous food and drink delivery options alongside live-streaming of all the comedy, magic, music and prizes from Church House.
3.12.21 Church House Gala details & tickets here Gala@Home details and tickets here Please email beth@reverserett.org.uk with any questions!
2.
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INSPIRATIONAL FUNDRAISER When you have a wife, 4 children (including one with Rett Syndrome) and a full time job fitting in exercise a couple of times a week is a big ask. Not for Vincent Johnsson though who despite his hectic life managed to run 5k every day for 501 days IN A ROW! After being inspired by friend, Tim Jones who set the ball rolling by running 366 days in a row (it was a leap year) Vincent decided to receive the baton from Tim and keep the runs going. He started on the day Tim finished, 3rd March 2020 and completed his challenge on 17th July 2021 raising an incredible £18,950! The challenge didn’t start as planned due to the Pandemic. The first three months of runs were done in Vincent’s back garden or even in the house adding an extra level to the challenge. The greatest thing about running is getting out into the great outdoors and getting some fresh air and head space, running around the garden, trying to avoid the kids isn’t ideal to say the least. And so on and on it went, whatever the weather, throughout periods of illness, whatever the day threw at him, Vincent did 5k until 500 days was up and he passed the baton on to his successor the wonderful Gillian Sanders who came along on his 501st 5k (yes he did an extra one). Gill who recently turned 70 has been doing at least 5k a day on her bike since 1st March this year. Vincent, we salute you. I’ll leave the last word to you.
“This challenge was nothing, compared with the challenge my daughter faces every day. I'm doing this because she can't."
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SPOT THE SIGNS The chances are you know what Rett Syndrome is. But could you spot it in a young child? In the UK, there are far less children and adults identified with Rett Syndrome than there should be. With treatments on the horizon, this needs to change. But finding children and adults with Rett Syndrome within the UK isn’t easy. Currently there is no quick, accurate and inexpensive way to check whether someone has mutations in the MECP2 gene. Testing is not triggered by any particular criteria within the NHS and the process is lengthy, with a recent survey conducted by Reverse Rett showing that test results have taken over 6 months to come back for 55% of young patients diagnosed with Rett Syndrome in the last five years.
To mark Rett Syndrome Awareness month, we’re sending a targeted mailout and ‘spotting the signs’ leaflet to all 650 MPs in partnership with CoreMarketing. The email calls for each MP to share the leaflet with their GPs, hospitals, sports centres and meeting places. We need everyone to know what the signs of Rett Syndrome in young children are, so that families, caregivers and supporting professionals can request MECP2 testing and a confirmed clinical diagnosis as soon as possible.
O C T O B E R IS RETT SYNDROME AWARENESS MONTH
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Issues around genetic testing The lack of a formalised trigger for MECP2 testing and subsequent delayed return of test results in young children with Rett Syndrome is damaging to the children and families who may not be able to access adequate or appropriate therapies, supports and services in the time they are waiting for test results. But with treatments and cures for Rett Syndrome looming, it is now more important than ever that we establish a genetic testing pathway so that young children with Rett Syndrome can be identified and registered quickly, giving them the best possible chance to access treatment at an early age. At Reverse Rett, we are working with industry partners and other genetic CNS rare disease groups to highlight our priorities with regards to diagnostic testing and to look for avenues for collaboration. We’ve also highlighted the issues around genetic testing in Rett Syndrome and the critical need for earlier and more effective diagnostic tools through Reverse Rett's participation in the Cambridge Rare Disease Network Rare Summit 2021 on October 7th, where our poster and video presentation about Rett Syndrome were on display.
Here is a summary of the issues we face in three distinct groups of patients; young children, adult women and baby boys with Rett Syndrome.
Young children 1
Current issues: There is no identified bio marker in the blood or urine that could indicate Rett Syndrome. There is a DNA sequencing test for Rett Syndrome which is not routinely provided in the UK. (1) There is no established ‘trigger’ for testing within the NHS for this patient group; i.e. young 2 female, developmental delay, decelerated head growth, unusual hand movements, lack of speech and or mobility. Testing is often initiated by parents; many under-represented and or disadvantaged groups are missed. Target reporting time is 8 weeks. A recent survey by Reverse Rett showed that test results took over 6 months to come back for 55% of patients diagnosed in the last 5 years. Children are deteriorating un-necessarily without access to an enriched environment 1 which can be provided through access to existing services. (2)
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Adults Current issues: (3)
The gene for Rett Syndrome1 was identified in 1999. Many adult patients who were clinically diagnosed before 1999 do not have confirmed genetic results and will therefore be technically ineligible for Gene Replacement Therapies. 2
Many adult patients with Rett Syndrome will be undiagnosed and will therefore not be able to access gene therapy and or other treatments. Since genetic testing has become available, many patients who would typ 1
There is a ‘throw-away’ attitude about adult patients who have lived with severe disabilities for life with regards to expensive genetic testing. A positive MECP2 test for an adult patient with Rett Syndrome, could provide access to both existing and emerging treatments which could significantly improve the lives of these patients and diminish the burdensome costs associated with long-term 24 hour care.
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Baby Boys Rett Syndrome is most often associated with little girls as it is an X-linked disorder. Males can be affected, typically more severely than females, at an earlier age. Current issues: The few baby boys who have been correctly diagnosed with Rett Syndrome in the UK in the last five years, have been diagnosed through Whole Genome Sequencing when they are already severely ill, in several cases, days from death. There is no established ‘trigger’ for MECP2 testing within the NHS for this patient group. i.e. young male with seizures, hypotonia, respiratory compromise, immune problems. These children are deteriorating and often dying without clinicians having access to critical and potentially life saving information about their condition because they are not accurately diagnosed until it is too late. A fast and effective MECP2 test for young males who may potentially have Rett Syndrome could provide access to, not just life-changing, but life-saving gene therapy treatment.
In summary: In the UK, there is no established route to a fast and accurate diagnosis for either: female toddlers baby boys adults which will be a barrier to accessing treatment when gene therapy and other life changing treatment becomes available for these patients.
1. http://www.labs.gosh.nhs.uk/media/1382396/rett_syndrome_v9.pdf 2. Downs, J., Rodger, J., Li, C. et al. Environmental enrichment intervention for Rett syndrome: an individually randomised stepped wedge trial. Orphanet J Rare Dis 13, 3 (2018). https://doi.org/10.1186/s13023-017-0752-8 3. Amir, R. E., Van den Veyver, I. B., Wan, M., Tran, C. Q., Francke, U., & Zoghbi, H. Y. (1999). Rett syndrome is caused by mutations in X-linked MECP2. Nature Genetics, Oct;23(2), 185–188. 4. https://www.reverserett.org.uk/living-with-rett-syndrome/cipp-rett-centre/
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DO ONE THING For Rett Syndrome Awareness Month this year, we’re asking you to do just one thing. Your thing. Anything! You could go for a run, hold a bake sale, do a sponsored silence, swim a mile, give up chocolate, run a coffee morning, write to your local newspaper, climb a mountain, sit in a bath of baked beans or eat a bucket of brussel sprouts! Anything goes and we can’t wait to see what weird and wonderful ideas you come up with! Please just register HERE so that we can send you your pin and certificate once all our ‘One Things’ are done! Of course, we’re not going to be just sitting back and watching your amazing efforts from our sofas! The Reverse Rett team are each going to be doing ‘one thing’ as well. Here’s what we’ve got planned . . .
“I started running during lockdown as a way to stay fit(ish) and sane (ish), so I decided to register for the Battersea 10k as my ‘Do One Thing’ Challenge for Rett Syndrome Awareness Month. But as I started to see other people’s challenges coming in I felt that I wanted to push myself a bit harder. For a nano-second, I thought about joining the amazing Louise Wainwright and shaving my head. That moment passed! Then, like millions of others, I was inspired by the London Marathon runners and decided to bite the bullet and sign up for my first halfmarathon. The Wimbledon Common halfmarathon is on 31st October, so perfect timing to round off awareness month!”
"I will also be joining my colleagues on the Snowdon trip. The opportunity to do something I’ve always wanted to do, as well as helping raise awareness of Rett Syndrome, was an opportunity I had to be part of. I also have another ‘One Thing’ up my sleeve which will be revealed at a later date. Watch this space ;)”
- Beth
- Ewelina
CHANGE IS WITHIN REACH
- Wesley
October is Rett Syndrome Awareness Month. Therefore the “One Thing” that I want to accomplish is to climb Mount Snowdon with my work colleagues.
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“In the past couple of years my daughter, Beth and stepdaughter, Amber have both lost the ability to chew and swallow safely. They now have to eat blended or pureed food and some of their favourite things are now completely off the menu.
“Like Beth, I only started walking/running during lockdown. By doing this, it got me out into the fresh air. I discovered parks and places within a short distance from where I live that I had never seen before and I have lived here for 26 years! We are surrounded by beautiful countryside.
Like them I am quite greedy and this has been distressing for all of us. For my one thing I want to raise awareness for something that a lot of people with Rett Syndrome go through. My girls are 26 and 21 so I also wanted to let people know that Rett Syndrome is relentless, it keeps on taking from our children.
For my One Thing, I have decided to climb Mount Snowdon. This was always a wish of mine but did not think I was fit enough. Thanks to activities during lockdown, I feel I could give it a go!” - Rashida
Myself and Gary Chambers will be all blending our food for the 31 days of October, eating no solids at all. I know we will struggle but at least our pain will end with a pizza on November 1st, theirs continues.”
"For my one thing I’m holding a Halloween party at our house and asking everyone who comes to donate £2. We’re having a costume competition, spooky treats and COVID friendly games like stabbing apples"
- Andy - Rachael
Day 2
Day 1
Andy and Gary
Andy and Amber
Snowdon
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THE BIG GIVE CHRISTMAS CHALLENGE 2021 Christmas comes early for families of people with Rett Syndrome with The Big Give Christmas Challenge. This fantastic campaign gives supporters an opportunity to DOUBLE their donation to Reverse Rett through the Big Give website. The challenge is supported by Trusts, Foundations, Philanthropists and businesses who put up the money based on an application from the charity or organisation involved. We have now raised over £1M through this challenge alone over the past 11 years and it’s become like a huge event in our calendar. It’s a time that brings all the supporters of Reverse Rett together where we double the impact on the vital work we do. Last year’s challenge was that in every sense of the word. The pandemic had decimated fundraising and it still hasn’t fully recovered. We launched our #LessBUTmore campaign in early November urging supporters to give whatever they could afford. It’s a chance to turn £2 into £4, £5 into £10 and £10 into £20 and we were delighted with the response with 528 individual donations and over £100K raised.
Andy and Amber
The money raised allowed us to continue funding Professor Santosh and his team at the CIPP Rett Centre which is making huge strides in Rett research and managing the day to day issues of our children with Rett Syndrome.
Day 1
Day 2
This year’s challenge will take place between Midday on 30th November and Midday on 7th December. We are hoping for your support again so if you would like to take part and help keep the CIPP Rett Centre improving the lives of their patients with Rett Syndrome whilst learning more about how to manage this complex disorder then please get the date in your diary.
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KEEP US IN MIND . . . A gentle reminder that it’s quick, easy and confidential to write or update your Will via our partnership with the National Free Wills Network. Leaving a gift in your Will to charity doesn’t have to be complicated and it doesn’t mean your family won’t be looked after. You can leave a small % of what’s left once everything else is taken care of, so you’ll know that your loved ones are protected and you’ve impacted Rett research for future generations as well. If you would like to find out more please visit www.reverserett.org.uk/support/giftinyourwill/the-nationalfree-wills-network/ or email beth@reverserett.org.uk
Congratulations to our latest 365 Club winners and the most enormous THANK YOU to everyone who has joined so far! We now have over 200 members and have hit our 6 month mark - where did that time go?! The 365 Club remains one of our only two sources of reliable, regular income and as such, absolutely critical to sustaining the work of the CIPP Rett Centre and to the clinical trials we are facilitating across the UK.
OVER 20R0S! MEMBE
Restrictions may have relaxed but fundraising has far from recovered and streams of income for charities remain incredibly limited. Which is why we couldn’t be more grateful to our 365 members - sustaining critical work in the fight against Rett Syndrome 365 days a year. The next draw takes place on Thursday 25th November - great timing for a little extra Christmasspending money! PLUS we’re offering our 250th member the choice of two complimentary tickets to the Winter Gala at Church House OR four food, drink and viewing packages for the Gala@Home event on Friday 3rd December. To be in with a chance of winning cash or tickets and to make an impact, CLICK HERE. CHANGE IS WITHIN REACH
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REVERSE RETT MATTERS
REVERSE RETT CHRISTMAS CARDS
Our 2021 Christmas cards are on their way! This year's designs have been specially created and hand-drawn by Karen Cundy, godparent and friend to Hannah and long-time supporter of Reverse Rett. There are 5 beautifully illustrated designs, with two of every design in each pack of 10. You can pre-order your cards by emailing ewelina@reverserett.org.uk and letting her know how many packs you'd like!
Reverse Rett Statham Link 1F Lancastrian Office Centre, Talbot Road Old Trafford, Manchester M32 0FP 0161 413 0585 info@reverserett.org.uk www.reverserett.org.uk
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Registered charity in England & Wales, charity number 1136809 and in Scotland, charity number SC046735. A company limited by guarantee number registered in England & Wales, company number 07278507.