March 2021
Covid & Rett Gene Replacement Therapies Update The CPMRS: A Rett Syndrome Clinical Treatment and Research Centre in London Three key clinical recommendations for families and carers to take to their Healthcare Professional What is happening with UK Rett Syndrome Clinical Trials? Inspirational Fundraisers - Jamie McDonald
Reverse Rett Statham Link 1F Lancastrian Office Centre Talbot Road, Old Trafford Manchester M32 0FP
Life in Lockdown: The Forgotten Families by Beth Johnsson Reverse Rett podcast & 365 Club Christian Lockwood - Katie And Grandad's Amazing Adventures
0161 413 0585
March is Make A Will Month!
info@reverserett.org.uk
NEW Angus Investigates
5 x 50 Reverse Rett Connect and Bitesize
www.reverserett.org.uk
Sessions
TRUSTEES Chair: John H Sharpe Vice-Chair: Helen Simmonds STAFF TEAM CEO: Rachael Stevenson Clinical Trial Lead: Andy Stevenson Finance: Rashida Hossain Events & Campaigns Co-ordinator Beth Johnsson Patient Registry Co-ordinator Wesley Havill Admin/Clinical Trial 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
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Happy spring everyone and welcome to the first Reverse Rett Matters newsletter. Even during the last dark year of Covid and intermittent lockdowns, so much good work has been going on at Reverse Rett that eventually our Board of Trustees insisted that we start drawing all our activities together into a quarterly newsletter and here we are. Historically at Reverse Rett, our focus has been on getting the work done, not talking about it. But as the world emerges from the cocoon of Covid and we are awakened into the bright light of resumed clinical trials with further transformative trials on the horizon, it’s helpful to have a fresh perspective on everything the charity has been doing and the progress being made.
All of it is making change happen for children and adults with Rett Syndrome.
It’s additionally refreshing in this abundantly screen focused situation, to have something available in hard copy. The newsletter will always be on our website but if you want to receive a hard copy, you can sign up online In every issue, as well as giving you all the latest health information from the CPMRS, we’ll keep you informed about all the other initiatives we have going on as well as sharing the stories of inspirational families and fundraisers. Our deepest thanks really does go to everyone who has kept on and keeps on supporting Reverse Rett throughout this difficult period, whether that’s through donating, fundraising, sharing information, campaigns and telling your own story. All of it is making change happen for children and adults with Rett Syndrome. Until next time,
Rachael x Co-founder, CEO
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The Covid situation continues to present additional challenges to and compound the existing challenges of the UK Rett community into 2021.Throughout the last year, Reverse Rett has made it a priority to bring the most up to date and accurate health information possible to families and carers of people with Rett. On the Reverse Rett website there is a designated Covid-19 section with Frequently Asked Questions and resources for families. We have recently received a lot of questions about access to vaccines for people with Rett Syndrome; the two most common questions are below:
If an adult with Rett Syndrome has no history of allergic reactions then it is presumed safe for them to have the currently approved Covid vaccines along with the rest of the general public.
None of the Covid-19 vaccines which are already approved in the U.K. have been approved for use in children yet. Until the MHRA approves a vaccine for children, most children under 16 will not be able to receive the vaccine.
This includes the Pfizer-BioNTech and OxfordAstraZeneca vaccines which are licensed for use in the UK. A third vaccine from Moderna, has also been approved and will be used when stocks become available in the spring.
Some exceptions have been made for children age 12-16 who meet all of the following criteria: Over 12 years old Spend regular time in a specialised residential care settings for children with complex needs Tend to get recurrent respiratory tract infections Have a serious neuro-disability (this would include Rett Syndrome)
People sometimes think that expected reactions to a vaccine are 'side effects' or a 'bad reaction.' This includes symptoms like an increase in temperature, a sore arm, fatigue, headache, chills, joint and/or muscle pains. You can read more about the expected reactions to vaccine and allergic reactions here. In someone who has seizures, even a slight increase in temperature can lower the seizure threshold. It's helpful to be aware of this and take any necessary precautions to regulate temperature if possible. If your person with Rett Syndrome has ever had an immediate allergic reaction—even if it was not severe—to a vaccine or injectable therapy for another disease, discuss with their doctor whether they should have the Covid vaccine.
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The JCVI says that “Recommendations on vaccinating children with other underlying conditions will be reviewed after the initial roll-out phase by which time additional data on use of the vaccines in adults should allow a better assessment of risks and benefits.” (P.13, chapter 14a, Covid: Green Book) Once there are more safety data on Covid vaccines for children under 12 and on the vaccine roll-out across the population in general, the MHRA will review risks and benefits of vaccinating children. They are likely to consider reviewing vaccinating CEV children first. If you think your child is clinically extremely vulnerable or you aren't sure, on the Reverse Rett website, we have published a letter from the CPMRS re CEV status in Rett. The letter could help you and your GP or paediatrician in reviewing your child's CEV status and eligibility for the Covid vaccine. If you’d like a copy of the letter, email us: info@reverserett.org.uk For the full UK vaccine priority list, search ‘Covid: Green book chapter 14a’ p8
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Supporters of Reverse Rett will be aware that we have been awaiting news on the Novartis Gene Therapies (formerly AveXis) OAV201 clinical trial for some time. In January 2021, Gene Replacement Therapy company, Taysha Gene Therapies, announced in a letter to the international Rett Syndrome community, that they plan to file an IND by the end of 2021. An IND application approval, permits a company to start a human clinical trial within 30 days. Very soon after the Taysha letter was published, Novartis announced via a letter to the international Rett Syndrome community, that they too expect to file an Investigational New Drug application by the end of 2021. At Reverse Rett, we’ve been financially supporting gene replacement work through our partnership with RSRT since we launched in 2010. For all of us living with Rett Syndrome, it feels like human clinical trials have been a long time coming. These two trials and other gene replacement treatments moving towards the clinic are happening as a direct result of work our supporters have helped to fund through the RSRT Gene Therapy Consortium work of Brian Kaspar, Steve Gray and collaborators Stuart Cobb and Gail Mandel.
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The Centre for Personalised Medicine in Rett Syndrome (CPMRS) provides specialist assessment and treatment for people with Rett Syndrome of all ages, as well as conducting clinical trials and research. The CPMRS team is led by Professor Paramala J. Santosh who has run the Centre for Interventional Paediatric Psychopharmacology and Rare Diseases (CIPPRD) based at the Maudsley Hospital, for more than a decade. Professor Santosh has many years of experience working with patients with Rett Syndrome and conditions which often accompany Rett, as well as other rare diseases, through the CIPPRD provision and through regular clinics at the Children’s Trust School-Tadworth. Professor Santosh was also the first clinician to become Primary Investigator for a U.K. clinical trial for Rett Syndrome in 2017 and successfully cared for more patients at his site at King’s College Hospital than any other trial site in the world. Whilst the Centre for Personalised Medicine in Rett Syndrome (CPMRS) is funded by Reverse Rett, Reverse Rett and Rett U.K. are working collaboratively to refer patients, support participation in clinical research and communicate wider learnings from the Centre.CPMRS most commonly sees patients with Rett Syndrome whose condition has become complex, including those who are having emotional, behavioural or autonomic difficulties and/or drug to drug interactions or who are not responding to treatment at the local level.
Families and carers can self-refer patients with Rett Syndrome and related disorders of any age to the CPMRS by emailing: cpmrs@slam.nhs.uk Both Reverse Rett and Rett U.K. can also assist with referrals as needed. Contact rachael@reverserett.org.uk for more information.
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Autonomic Characteristics of Sudden Unexpected Death in Epilepsy in Children-A Systematic Review of Studies and Their Relevance to the Management of Epilepsy in Rett Syndrome (Singh et al, 2021) Congratulations to Professor Santosh and the team, who have recently had their article on Sudden Unexpected Death in Epilepsy (SUDEP) in children and its relevance to the management of epilepsy in Rett Syndrome published in Frontiers in Neurology. Here, the first author and Reverse Rett Advisor, Dr Singh, summarises the article. ‘Sudden Unexpected Death in Epilepsy’ (SUDEP) arises when death occurs unexpectedly in children with epilepsy. Knowledge of SUDEP in the paediatric literature is relatively scarce, especially in childhood disorders with a clinical history of epilepsy, such as in Rett Syndrome. The first objective of this article was to identify studies on the autonomic features of SUDEP in children to see whether we could recognise profiles or patterns of SUDEP in children. The next objective was to use this knowledge to develop and propose any methods that enable the early detection of events that could increase the risk of SUDEP in children with Rett Syndrome. This article showed that while direct evidence regarding paediatric SUDEP studies was low, the information learned did allow further understanding of the autonomic profile in childhood epilepsy and the events that could lead to SUDEP. This information is useful for the management of epilepsy in Rett patients and shows how essential it is to understand seizure control in this patient group. The paper suggests that in vulnerable populations such as Rett Syndrome, where there is already a widespread autonomic dysregulation, pro-active monitoring of the autonomic profile in this patient group before and after-seizure onset would be beneficial in managing epilepsy better and reducing the SUDEP risk. The full article, entitled, ‘Autonomic Characteristics of Sudden Unexpected Death in Epilepsy in Children-A Systematic Review of Studies and Their Relevance to the Management of Epilepsy in Rett Syndrome’ can be read at www.frontiersin.org
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Differentiating Females with Rett Syndrome and Those with MultiComorbid Autism Spectrum Disorder Using Physiological Biomarkers: A Novel Approach (Iakovidou N, 2020) In this paper published in the Journal of Clinical Medicine on 2nd September 2020, the CPMRS share findings that they have identified biomarkers which can distinguish between girls with Autism Spectrum Disorders and those with Rett Syndrome with 95% accuracy. Using wearable technology, researchers were able to identify patterns in the information which are unique to Rett Syndrome and unique to autism respectively. This could help doctors to tell the difference between the two conditions at an early age, quickly and cost effectively, avoiding delays in providing the right early intervention for young children. Most critically, whilst numerous treatments and potential cures for Rett Syndrome are moving full speed towards the clinic, we still need effective outcome measures to accurately assess and demonstrate improvements brought about by a particular drug or treatment. Whilst further studies are needed, this study moves us ever closer to effective outcome measures for Rett Syndrome.
Organic Features of Autonomic Dysregulation (AD) in Paediatric Brain Injury – Clinical and Research Implications for the Management of Patients with Rett Syndrome (Singh et al, 2020) In this paper, published in the journal, Neuroscience and Biobehavioural Reviews (Singh et al. 2020) in August 2020, the CPMRS team were looking to assess whether the information from studies in children with AD following brain injuries can be used to further our understanding of the AD seen in children with RTT. The overall finding is that studies of AD following childhood brain injury do provide valuable information on the recognition, treatment and clinical management of AD in patients with Rett. Whilst management of AD is complex in patients with Rett due to so many different symptoms, occurring at different times, in different patients during the course of the condition, early recognition of the clinical signs and symptoms which predict AD would be of benefit to these patients.
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Three key clinical recommendations for families and carers to take to their Healthcare Professional I) AD in Rett Syndrome involves multiple overlapping systems. It would be useful, following a clinical diagnosis of Rett, to adopt the use of non-invasive wearable sensor technology for the assessment of HRV and EDA to provide information on functional outcomes and serious physical deterioration, ie infection. II) Sensory issues as well as diaphoresis and dystonia, should be closely monitored. III) Medication-induced side effects – especially centrally acting medications such as benzodiazepines and morphine that have multi-system side effects and may worsen autonomic function, ought to be used with caution. References Singh J, Lanzarini E and Santosh P (2021) Autonomic Characteristics of Sudden Unexpected Death in Epilepsy in Children—A Systematic Review of Studies and Their Relevance to the Management of Epilepsy in Rett Syndrome. Front. Neurol. 11:632510. doi: 10.3389/fneur.2020.632510 Iakovidou N, Lanzarini E, Singh J, Fiori F, Santosh P. Differentiating Females with Rett Syndrome and Those with Multi-Comorbid Autism Spectrum Disorder Using Physiological Biomarkers: A Novel Approach. J Clin Med. 2020 Sep 2;9(9):E2842. doi: 10.3390/jcm9092842. PMID: 32887357. Singh J, Lanzarini E, Santosh P. Organic Features of Autonomic Dysregulation in Paediatric Brain Injury – Clinical and Research Implications for the Management of Patients with Rett Syndrome. Neurosci Biobehav Rev. 2020 Aug 27:S0149-7634(20)30550-9. doi: 10.1016/j.neubiorev.2020.08.012. Epub ahead of print. PMID: 32861739.
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Recruitment for the clinical trial for Anavex 2-73 for people with Rett Syndrome age 1845 is ongoing. Currently the trial is paused because the clinical Research Facilities at both Manchester and King's College Hospital sites are prioritising Covid clinical trials. However, both trial sites are preparing to bring patients in as soon as they are permitted by their local CRF authorities. If you are interested in someone with Rett Syndrome between the age of 18-45 participating in the Anavex 2-73 trial please contact andy@reverserett.org.uk The UK Anavex 2-73 clinical trial for children is still awaiting ethics approval. Please also contact andy@reverserett.org.uk to register interest in this trial. The GW Pharmaceuticals Cannabinoid Trial was terminated in 2020 due to the on-going disruption of the pandemic. Reverse Rett continues to support all UK patients on the open label extension period.
If you have a question which has not been answered here, please contact us on 0161 413 0585 or by email info@reverserett.org.uk or on any of the socials: Twitter/Instagram/Facebook @reverserett
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Inspirational Fundraiser Jamie McDonald Fundraising during a pandemic is really difficult and takes some imagination. With organised runs, bike rides etc cancelled and events not able to take place it takes dedication and planning to come up with something that captures the public imagination. Jamie McDonald did just that during January. He decided to run the month. Starting on New Years Day with just 1 mile and finishing on January 31st with 31, he ran 507.5 miles in total (he ran 11.5 miles more than necessary) during the month and spent the month sober just to make it that extra bit tougher. Here Jamie tells us about his ‘Month from Hell.’
The reason I took on this challenge, just like my previous running challenges, is because of my cousin Debi’s daughter, Shona.
"My intention with this challenge, first and foremost, was to push myself to a limit I hadn’t ever thought of reaching before and to get myself out of my comfort zone. I have read a few autobiographies in recent years of individuals overcoming incredible odds for an event or challenge in their life and I admired that commitment to a cause because it took guts to take it on and see it through. Part of me knew that I had to take this opportunity to raise awareness and money for this fantastic cause. By doing so, I gave myself no way of getting out of this challenge without going through it, making it public would keep me accountable when times got tough. The first half of the month was no real danger for me as I have become more comfortable with distance running over the past few years but as I worked my way into week three, that is where my momentum and attitude toward the challenge started to wobble. If I am perfectly honest, the 24th of January was a fairly unpleasant day for me. I was tired, aching and my pace had seriously dropped below what I had envisioned it to be at and I felt totally finished, which was crushing for me. I was in pieces, physically and emotionally. That is where my vital support crew came in, at this moment it was my Mum who really helped me piece myself together when I felt like I was finished.
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She knew just what to say to reset my mentality and to remind me of how far I have come and that I should be proud no matter how far I go. That is when I knew I needed to go all the way. That is when my approach to the challenge shifted from trying to run each day with an impressive time and just to go the distance. That is what the challenge was really about, setting myself this goal that on paper seemed insane, then digging deep and getting the miles in. Having my family there by my side for a good portion of the last week was instrumental to crossing the finish line after mile thirty-one. Even having someone to march by my side to chat with and take my mind off of the pain in my calves and feet, played a vital role in me getting through those near two-hundred miles of week four. I couldn’t have done it without their continued support. The support from family and friends for fundraising efforts in the past has been good but this time round the support was incredible. Having words of encouragement along the journey and watching the JustGiving total continue to climb as the weeks went on was a real motivator to grit my teeth and keep pushing. Another incredible milestone during the challenge came in the form of a very generous £1,000 donation from Ian Mills at Exceed Energy. An enthusiastic supporter to this journey and the cause, having support like that truly blew me away. The reason I took on this challenge, just like my previousrunning challenges, is because of my cousin Debi’s daughter,Shona. Seeing all the work that Debi puts in to look after Shona gave me an incentive to get involved with fundraising efforts myself. Shona has been living with Rett Syndrome for 14 years now so I want to do what I can to make Rett Syndrome a thing of the past as quickly as possible."
You can still support Jamie by visiting his Just Giving page www.justgiving.com/fundraising/jamie-mcdonald20
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I was reluctant to write this. In these turbulent times, when so many are dealing with grief, loss, despair and devastation, the story of my family doesn’t seem particularly significant. But in recent days, as there has been an increasing focus on those with learning disabilities in the media, as I’ve spoken with numerous other struggling parents and as I’ve watched my own daughter’s condition worsen, reluctance has turned to resolve. The story of my family is the story of many families of a child with complex needs. Our 14-year-old daughter, the eldest of our four small people, has Rett Syndrome. Diagnosed aged 2 and now nearly 14, she is non-verbal, almost non-mobile, dyspraxic, epileptic and entirely dependent on others (right now, us) for every daily need. In ‘normal’ life she thrives at school. Not only does school provide the daily specialist support children with complex needs require for their physical well-being (Physios, OTs, SLTs), it also often provides the social environment which is so critical to their mental well-being.
H craves and requires a huge level of interaction and stimulation and, despite three little brothers and two cats, life in lockdown simply doesn’t cut it. Not in the sense that she’s a bit bored and might have fallen behind ‘expected standards’ by the time school resumes. In the sense that she is physically and mentally suffering. Her mobility is deteriorating; without daily physio input and access to specialist equipment she loses confidence, strength and muscle tone. Right now, she is reluctant to even weight-bear. At 65 kilos to my 50, this presents a ‘challenge’. She may walk again in time, but she may not. Her seizures are intensifying; fuelled by anxiety and frustration, her usually-well-controlled epilepsy has worsened, with seizures which prevent her from breathing properly and turn her lips blue. Her three little brothers have watched. Their trauma may be forgotten, but it may not. Her engagement is waning; even a busy, noisy household can’t replicate the school environment, and weekly Zoom singalongs can’t make up for the hours of lost interactions and stimulation. My highly sociable girl with her wicked sense of humour is sleeping away hours of the day, exhausted by seizures and anaesthetised by the monotony of lockdown. She may come back to us, but she may not.
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we simply don’t know if our children, who have already lost so much, can afford to lose any more.
I could go on – scoliosis worsening, hand-function deteriorating, bones weakening. Do I worry about my sons falling behind in Maths? Not so much. Yet whilst the cost of neurotypical children missing school has been a consistent feature of the daily briefings and lockdown road maps, the cost for vulnerable children, for whom school is so much more than fractions and digraphs, doesn’t seem to have been being counted at all. Nor indeed has the cost to their families: parents who have necessarily become 24/7 carers, desperately trying to fill the gaps of those therapists, teachers, TAs, school nurses and peer groups who are so critical to their child’s well-being; parents who are juggling home-working, home-schooling, full-time care and permanent guilt (it is impossible to do any of it well enough); siblings who have shouldered more than most - helping at home, completing their schoolwork, witnessing their brother/sister’s deterioration and their parents’ frustrated helplessness. The damage to families like ours may be repairable, but it may not. The narrative has omitted these children and their families right from the start. ‘Vulnerable’ has indicated the over 70s and adults with underlying conditions; children with serious underlying conditions have (not unusually) fallen through the cracks. They have received letters instructing them to shield, but the impact of shielding, for them and their families, has been at best underestimated and at worse wilfully ignored. In recent weeks it has been encouraging to finally see unpaid carers and adults with LD classed as priority groups. But vaccines for clinically vulnerable children (even those who are 15kilos and 2cms bigger than their now-vaccinated parent) are still a way off. Shielding remains in place until 31st March - the start of the Easter holidays, so for vulnerable children (and many of their siblings) school is still out. It’s a daunting prospect for families like ours. Not because we’re exhausted (although we are) or emotionally drained (although we are) or desperate for a moment to just breathe: but because we simply don’t know if our children, who have already lost so much, can afford to lose any more.
Beth x 15
March is Make A Will Month Did you know... Leaving a gift in your will to Reverse Rett is as easy as making one call to your solicitor or filling out one simple form? A gift in your will to charity can be a % of whatever is left when your family has been provided for and everything else has been covered? You can change your mind and amend your Will at any time? Leaving a gift in your Will to research, however small, could transform lives for generations to come? During Free Wills Month in March, anyone aged 55+ can have his/her simple Will written or updated free of charge by using participating solicitors in selected locations across England, Scotland and Wales. Please take a look at the enclosed Free Wills Month postcard, or for further information about leaving a gift in your Will contact beth@reverserett.org.uk
I want to think that for generations to come there will be continued research and hope for all those families. It’s quick and easy and it doesn’t have to be a huge amount, but it’s a small something that I want to do. Gill, family friend to Hannah, who has Rett Syndrome.
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Have you listened to the Reverse Rett podcast yet? The last 12 months has been a difficult and isolating time for all of us, especially for those who are trying to protect someone with a rare disease and manage the often overwhelming responsibility of caring for them at the same time. Sharing the stories of people living with Rett Syndrome from all backgrounds, the podcast gives listeners insight into the lives of families who love someone with Rett and where needed, a sense of solidarity in these challenging days. Listen to the latest episode on Apple podcasts, spotify, etc 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.
Coming Soon: The Reverse Rett 365 Club! We are hugely excited to be launching our brand new 365 Club in the coming weeks! The 365 Club will be an opportunity for those who are passionate about supporting research to join together and make a significant impact on the lives of those living with Rett Syndrome right now. At the same time, every club member will be in with a chance of winning some fantastic cash prizes each month!
Watch this space for full details and how to join! 17
In the early part of 2021, Reverse Rett was campaigning for the re-prioritisation of people with a learning disability for Covid vaccine as well as for support from the government for UK medical research charities who have fallen through the cracks of previous government covid support for charities.
In November 2020, Reverse Rett, Rett UK and other UK disability charities, wrote to the Health Secretary Matt Hancock asking him to reprioritise people with learning disabilities for the Covid vaccine. In January 2021, Reverse Rett has also sent letters to the PM Boris Johnson, Vaccines Minister Nadhim Zahawi, Minister for Disabled People, Justin Tomlinson, Baroness Jane Campbell, as well as various national newspapers, trying to bring attention to this issue. The reason that this is important for the UK Rett Syndrome community is because many people with Rett Syndrome will not be technically considered Clinically Extremely Vulnerable and so will only become eligible for the covid vaccine, further down the list under ‘other health conditions/learning disability.’ As most families will be aware, there are other access issues, compounding health issues and societal health inequalities which make our people with Rett more vulnerable than the general population than is properly understood by the wider UK medical community. At Reverse Rett, we believe it is important that people with Rett Syndrome are vaccinated without delay and the best way to get this message heard is through the broader learning disability community. STOP PRESS: On February 23rd 2021, the JCVI wrote to Health Secretary Matt Hancock, advising him of their new recommendations that all people who are registered with their GP as having a Learning disability, should be immediately eligible for the Covid vaccine as part of priority group 6. If you have a child with Rett Syndrome under 16, you should still register them as having a learning disability with the GP as soon as you are able.
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AMRC #ResearchAtRisk campaign: It has been widely publicised in the media that in 2020, the government provided £750 million in emergency funding to UK charities because of the Covid crisis. But not all charities were eligible for that emergency funding and Reverse Rett was one of them. The funding was focused on charities who were providing frontline support in the pandemic, which does not include most medical research charities. This meant that whilst many of these charities have activities which have needed to continue throughout the pandemic, because they did not count as ‘frontline covid services’ the charities have received no government support to subsidise the immense loss of income facing these charities due to restrictions on community fundraising throughout 2020 and into 2021. Although charities are able to use the government’s job retention scheme (furlough), those who have ongoing activities to run, actually need their people in place to do the work and so are not able to use the furlough scheme. At Reverse Rett, we are using the furlough scheme to the maximum extent possible, whilst still maintaining the ability to implement our work, the key elements of which are below.
Reverse Rett provides 100% funding for the UK’s only clinical treatment and research centre for Rett Syndrome, the CPMRS, based at King’s College Hospital in London.
Reverse Rett is responsible for disseminating research findings from the Centre, giving local clinicians and affected families access to emerging healthcare information.
Reverse Rett supports international Rett Syndrome and MECP2 Duplication Syndrome research projects through our partnership with the US Rett Syndrome Research Trust.
Reverse Rett runs the UK’s only national Rett Syndrome Patient Registry.
Reverse Rett provides clinical trial support services for industry partners and families, enabling effective recruitment and participation in UK Rett Syndrome trials.
Reverse Rett collaborates with other UK patient organisations to improve the health and lives of people with Rett Syndrome in the UK more broadly.
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Katie And Grandad's Amazing Adventures Christian Lockwood loved making up stories for his children when they were growing up and he’s now put them to good use by releasing his first children’s book. Katie and Grandad’s Amazing Adventures: Falling in a Picture and Katie’s 7th birthday have recently been released, with 50% of the profits being donated to Reverse Rett. Christian’s granddaughter, Katie has Rett Syndrome and is the inspiration behind this series of books. Christian says: “After Katie was diagnosed with Rett Syndrome in her toddler years, one of my first thoughts was ‘I want to raise some money’. After toying with the idea of jumping out of an airplane or auctioning something off, I decided I wanted to write a book. This way I could share my imagination with children all over the world. I decided to gift 50% of the profit from the books to Reverse Rett because my daughter, Jessie was already a supporter. Reverse Rett are working on treatments and a cure and that’s where I want the money to go in the hope that Katie, will one day in the future be one of the patients to benefit. My burning desire is for all children to read Katie and Grandad’s Amazing Adventures and to be excited by each new adventure that they go on. Our family are fully behind developing a cure for these amazing children and adults.”
Books 1 and 2 are available on HERE
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5 x 50
The 5x50 is called a challenge for a reason! 5ks every single day for 50 consecutive days is challenging at the best of times, let alone during a global pandemic! But it is also always a brilliant and hugely rewarding challenge. It brings together people from all over the globe, of all ages and fitness levels, who share a determination to impact Rett research NOW! Starting on 28th February, our ten-strong team has been striding out every day, whatever the weather, and will keep doing so until 18th April. For those living with Rett Syndrome and related MECP2 disorders, there is no final 50th-day conclusion to their daily battles and there is no vaccine on the horizon. This is what will keep us all going, even on the days when we feel like we just don't want to!
You can support the 5x50 team HERE
Angus Investigates We recently began a new series of interviews hosted by 11 year old, Angus McKinney. Angus will be talking to scientists, doctors, families and inspirational fundraisers about all things Rett Syndrome. Angus Investigates will help us understand more about the work going on in Rett Syndrome research, how clinicians treat the condition on a day to day basis, how families cope with living with Rett and what makes people fundraise for Reverse Rett, often pushing their minds and bodies to the limit. He has already interviewed his dad, Ross who will be rowing the atlantic later this year, Scientist, Jim Selfridge who was part of the Rett reversal experiment in 2007 and inspirational fundraiser, Jamie McDonald who was still recovering from his crazy running challenge. With more interesting guests lined up we are all excited to keep watching Angus at work.
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In response to the ongoing pandemic and the clear need for increased community connections and support throughout these challenging times, we are pleased to be launching a new initiative: ‘Reverse Rett Connect’. Under the umbrella of ‘Connect’, we will be looking to provide various points of contact and support for families: our well-established Parent to Parent scheme, a Family Forum discussion platform, and our new ‘Bitesize sessions’. Each month, we’ll run a series of one-hour sessions, all based around a particular theme, incorporating presentations/workshops from professionals, Q&A and open discussions. We’re kicking off in March with a series of three sessions on the topic of Rett, Covid19 and Family WellBeing. You can find full details of these sessions and how to book on the back page! We hope you will join us!
Sessions are open to all, completely free and without obligation.
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BITESIZE Professor Santosh explores the impact which different aspects of the pandemic have had on patients with Rett Syndrome, from management to guidance, and what this means as we cautiously move out of lockdown.
Consultant Clinical Psychologist from the Centre for Personalised Medicine in Rett Syndrome, Ruksana Ahmed, and her colleague Tilly Mastroianni, speak about coping strategies and maintaining well-being for families of children/adults living with Rett Syndrome.
Chartered Physiotherapist and Qualified Yoga Teacher Caroline Foster leads an introduction to yoga for all, focusing on the many benefits for physical and emotional well-being.
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.
www.reverserett.org.uk
Reverse Rett Statham Link 1F Lancastrian Office Centre, Talbot Road Old Trafford, Manchester M32 0FP 0161 413 0585 info@reverserett.org.uk
Find us on Facebook, Twitter, Instagram and Vimeo under 'Reverse Rett'
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.