Reverse Rett Matters (June 2021)

June 2021

CONTENTS Welcome Letter

Our new strategy 2021-2016 Gene Therapy Companies Update New paper from CIPP Rett Centre Donate your birthday UK Clinical Trial Update Inspirational Fundraisers Mark Reilly Get to know our team 365 Club Winners Ultra Challenges 2021

Reverse Rett Statham Link 1F Lancastrian Office Centre Talbot Road, Old Trafford Manchester M32 0FP

National Free Wills Network Winter Gala Reverse Rett Connect and Bitesize Sessions

0161 413 0585

Reverse Rett Podcast

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/Rett Connect: 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 2

MAKING CHANGE HAPPEN

Hello and welcome to our second Reverse Rett Matters newsletter.

Rett Syndrome hasn’t paused though and neither have we.

It seems impossible that it is already summer time again. So much of life has felt on pause over the last year, despite the changing calendar.

Rett Syndrome hasn’t paused though and neither have we. In the last three months, our Board of Trustees has signed off our long term strategy for the next five years.

Aptly named, ‘Change is within Reach,’ you’ll find this document enclosed/attached with your newsletter.

Please read it. It spells out where we are up to as an organisation and where we are heading. If you care about someone with Rett Syndrome in the UK and or the work of Reverse Rett, it’s not to be missed.

Over the last three months, we’ve continued to provide Reverse Rett Bitesize and family forums through the Rett Connect project too despite our funding finishing in March 2021.

Positive feedback on these events and on the podcast are very helpful for finding funding. Please send by email or DM us on any of the socials @reverserett

Over the last quarter, we underwent our annual financial audit by independent auditors, Slade Cooper and a peer review audit by our umbrella organisation, the Association for Medical Research Charities (AMRC). The AMRC has over 150 member organisations, all UK based research focused organisations which are reviewed regularly and held to a very high standard for continued membership.

With all that going on, we are still as always, trying to generate income to meet our commitments to the CIPP Rett Centre and the Rett Syndrome Research Trust Roadmap to a Cure. These commitments can only be met because of the ongoing determination and commitment of our families and supporters. If you’re still reading this, that means you. Thank you for helping us.

One of the requirements as a result of our recent AMRC audit was to increase the number of Research Review Committee members to include a broader range of skills, experience and backgrounds including patient voice and we are pleased to say, we now have seven members, who you can read more about here.

Until next time, Rachael Stevenson Reverse Rett

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MAKING CHANGE HAPPEN

CHANGE IS WITHIN REACH REVERSE RETT STRATEGY 2021-2026 Over the last couple of years, the Board of Reverse Rett determined that we needed to develop a long term strategy to better articulate the direction of the organisation as we move into a time when transformative treatments start to emerge for people with Rett Syndrome.

When we talk about transformative treatments for Rett Syndrome, what we are really talking about is a cure. People and organisations do not like to use the word ‘cure’ because it brings to mind a complete recovery from disease which we still do not know is possible in Rett.

‘Transformative treatments’ seems like a better (safer) description because it is referring to treatment which, while it may not completely recover someone from disease, there is the potential for it to significantly change their lives.

To do this, we had to look at who is missing from the Rett Registry UK and work out how we can find them and make sure they are counted and reachable when the time comes.

The result of all this work is our new five year strategy; ‘Change is Within Reach.’ This document is enclosed with this newsletter. It tells you what is important to us at Reverse Rett, and how we plan to meet the lofty aims described within the document. It starts with our vision which is spelled out below.

As an organisation, we needed to plan towards what we’d still need to do, once that long awaited ‘cure’ starts to emerge. To do this, we had to think about a lot of things; how the cure or treatment might look different for different people with Rett Syndrome of different ages. Whether treatment will be funded for both children and adults and what we can do to help as many people as possible access treatment.

We hope you will read it and let us know your thoughts by emailing rachael@reverserett.org.uk or message us on any of the socials @reverserett.

We had to look at the kind of medical and therapeutic support that each of those groups might need as and when they have access to treatment. Crucially, we had to look at how we can ensure that as many people, children and adults with Rett, have access to emerging treatments as possible.

CHANGE IS WITHIN REACH

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LATEST RESEARCH NEWS In May, Taysha Gene Therapies announced the publication of new preclinical data for TSHA-102 in Rett Syndrome.

The data were published online and will be included in the May edition of Brain, a highly esteemed neurological science peer-reviewed journal.

These data support the company’s intent to file an IND/CTA in the second half of this year.

Fellow gene therapy companies, Novartis Gene Therapies (formerly AveXis) and Alcyone Therapeutics are projecting that they will also file INDs towards the end of this year.

Reverse Rett has contributed directly to the development of all these programs through the RSRT Gene Therapy Consortium over the last decade.

Thank you to all our fundraisers and supporters for bringing us to this next exciting milestone.

Investigational New Drug (IND) program is the means by which a pharmaceutical company obtains permission to start human clinical trials before a marketing application for a drug has been approved. Once an IND is submitted, the United States Food and Drug Administration (FDA) has 30 days to object to the IND or it automatically becomes effective and clinical trials may begin.

A Clinical Trials Application (CTA) is the application/submission to the competent National Regulatory Authority(ies) for authorization to conduct a clinical trial in a specific country other than the U.S.

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Two medications which improve physiological measures in patients with Rett - Latest publication from Professor Santosh and team at the CIPP Rett Centre In April, a paper entitled, Emotional Behavioural and Autonomic Dysregulation (EBAD) in Rett Syndrome - EDA and HRV monitoring using wearable sensor technology was published in the Journal of Psychiatric Research by the CIPP Rett Centre in London headed by Professor Santosh.

Sometimes we find that the information we put out about research is overwhelmingly complex, so before the main body of this article, we are sharing key information in bullet points in the hope that it reaches more people.

If you want more complex information please go to the next page, where there is a full Q and A with one of the authors of the paper and Reverse Rett Research Review Committee Member, Dr Jatinder Singh.

CIPP RETT CENTRE

REVERSE RETT MATTERS

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MAKING CHANGE HAPPEN

1, What were you aiming to find out in this paper?

Emotional, Behavioural and Autonomic Dysregulation (EBAD) frequently occurs in neurodevelopmental disorders. In patients with Rett Syndrome (RTT), there is limited information on how the autonomic components of EBAD can be targeted using different treatments and the impact of these treatments on the management of EBAD. As Rett patients have very limited communication skills, finding ways to assess EBAD symptoms remains challenging.

In this study, we wanted to see if we could treat the autonomic dysregulation in Rett patients by measuring Heart Rate Variability (HRV) and Electrodermal Activity (EDA) and assess the impact of treatment on the emotional and behavioural components of EBAD. We did this by (I) using wearable sensors to measure EDA and HRV in 10 Rett patients and (2) using different treatments to manage the EBAD symptoms.

2, What did you find out?

In this pilot study, we showed that in some patients, buspirone could normalise EDA, and in another patient, an increase in EDA was associated with a worsening of emotional and behavioural symptoms. While HRV did not show clinically meaningful information in this patient group, EDA normalisation appears to be associated with improving EBAD symptoms in patients treated with buspirone. This suggests that EDA would be helpful for monitoring autonomic dysregulation and provides a useful biomarker for tracking the symptoms of EBAD in Rett patients.

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3, Explain what 'electrodermal' activity is in the context of downstream responses of the autonomic system?

The autonomic component of EBAD can be targeted, which can help manage the emotional and behavioural symptoms. Autonomic dysregulation occurs due to the imbalance of the Autonomic Nervous System (ANS). The ANS has two major components – the parasympathetic and sympathetic component that are tightly regulated.

In Rett patients, there is a problem in the way these components act, and like a see-saw, this balance can either shift to a more dominant parasympathetic or sympathetic profile. You may be asking, where does ‘electrodermal’ activity (EDA) fit into this? EDA reflects the electrical changes at the skin surface during sweating, which is regulated by sympathetic activity. Putting it simply, EDA is a measure of the sympathetic activity of the ANS, and this activity can be modulated by the environment (thermoregulation) or by the ANS (emotional or behavioural regulation).

4, Why do you think heart rate variability is not as helpful in measuring baseline/clinical outcomes in Rett compared to EDA? Measurement of autonomic dysregulation is complex. This complexity is increased due to the different clinical presentations of EBAD across the Rett population. As the disorder advances, the symptoms of EBAD probably become worse. Other studies have shown HRV variability changes across the lifespan in Rett patients. The worsening of EBAD in Rett patients could be reflected by changes in HRV during different developmental milestones. In this pilot study, EDA seems to be a better indicator of the sympathetic component of the ANS. In our sample of 10 patients, HRV was highly variable and less associated with the symptomatic improvement in EBAD.

5, Which symptoms did you see improving and is this clinically correlated with improved EDA baseline data with patients on buspirone and sertraline?

In our sample, four patients were on buspirone, two on sertraline, one on gabapentin and three were not started on medications. In three patients, buspirone normalized the EDA, and this was reflected by an improvement in EBAD. The emotional and behavioural symptoms of both patients treated with sertraline (including one with normal EDA) also significantly improved.

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6, How could assessment of EDA through noninvasive wearable technology in Rett help manage complex patients who are treatment-resistant?

Patients with EBAD typically can be treatment-resistant. Our study showed an association between buspirone treatment of EBAD in RTT patients and improved clinical symptoms. This was reflected by EDA values becoming normal.

The assessment of EDA using non-invasive wearable sensors could offer another cost-effective option for healthcare professionals to assess autonomic dysregulation in Rett patients objectively. This strategy could also pave the way for more individualised treatment options to manage EBAD in patients with complex symptoms who are also treatment-resistant.

7, Key take-home messages for families?

The key take-home message would be that elevated and sustained EDA levels can be a sign of impending or concurrent serious physical illness in patients with RTT. EDA could also provide valuable information concerning the physical deterioration of the patient by assessing how patients might adapt to autonomic changes in the longer term. All of this information can enrich guidance for families and may help keep people with Rett Syndrome of any age as safe as possible than they would be otherwise.

Definitions Electrodermal Activity (EDA): refers to variations in the electrical conductance at the skin surface in response to sweating Heart Rate Variability (HRV): the variation of time between each heartbeat The full published manuscript can be found here Gualniera L, Singh J, Fiori F, Santosh P. Emotional Behavioural and Autonomic Dysregulation (EBAD) in Rett Syndrome - EDA and HRV monitoring using wearable sensor technology. Journal of Psychiatric Research. 2021 Apr 7;138:186-193.

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IN SHORT People with Rett Syndrome often have emotional, behavioural and autonomic problems but we don’t have a lot of information about how to treat these problems in these particular patients.

It is also hard to know what is working to help these problems in people who aren't able to speak or communicate in the usual way.

In this study, the Researchers looked at signs in the body which could be measured by wearable technology (like a Fit Bit), as they tried two different medications to try to treat EBAD issues in children with Rett Syndrome.

They found that measuring something called Electrodermal activity was helpful.

Electrodermal activity is connected to changes at the surface of our skin during sweating which can be a physical sign of having EBAD issues.

In some patients, Busipirone normalised EDA and the patients showed improvements in their EBAD symptoms.

Patients treated with Sertraline also showed significantly improved EDA. One patient treated showed significant increase in her EDA which was later shown to be related to a period of severe illness within 48 hours.

The key message is that high EDA levels on an ongoing basis can be a sign of serious illness in patients with Rett.

EDA could also provide information about improvements and deterioration in patients when trialling new medications for EBAD.

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DONATE YOUR BIRTHDAY It’s fair to say that it’s been a challenging year and a bit on the fundraising front. With official challenges cancelled and events unable to take place supporters have had very limited options.

One thing though has really taken off since the start of the pandemic...Facebook birthdays!

We have been overwhelmed by the number of people who have given up their special day to help Rett Syndrome research. It really is a selfless thing to do and the money raised has really helped us during this difficult period.

It’s really easy to do, just head to the Reverse Rett Facebook and create your birthday fundraiser. You can then invite your friends to contribute directly and share on your personal page. If you’re not a Facebook user then you can set up a birthday Just Giving page really easily then email it to your contacts.

It’s amazing how much money you can raise by not eating cake though I’m sure no one would begrudge you a slice or two.

Huge thanks to everybody that has helped get us through this difficult period by giving up your birthday!

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UK CLINICAL TRIAL UPDATE

It’s been a frustrating 15 months for clinical trials for Rett Syndrome in the UK. Lockdown 1 and 2 has severely delayed the Anavex 2-73 clinical trial in adults 18 and over), with start dates scheduled then postponed a number of times.

Thankfully it looks like the trial, which is taking place at the CIPP Rett Centre at King’s College Hospital in London, under Professor Santosh and the CRF at St Mary’s Hospital, Manchester under Dr Banka is due to start very soon.

The trial has been completed in the United States with no adverse result or safety concerns.

We are currently waiting for top line data for the drug to be released.

As far as clinical trials go this one is quite straightforward to take part in. It is 7 weeks long with an optional 12 week extension period. There are no overnight stays and a maximum of 2 in-person hospital visits. Anavex are hoping for a global improvement in symptoms as the primary outcome measure

The best way to access UK clinical trials for Rett Syndrome is by registering your child or adult with Rett Syndrome on the Rett Registry UK. Reverse Rett has provided clinical trial support service to all UK Rett trials to date. We support trials by: Recruiting patients from the Rett Registry UK Pre-screening and referral Supporting patients and families withlogistical arrangements for study visits on behalf of the trial sponsor

Click here to join the Rett Registry UK

Reverse Rett are currently recruiting for the Manchester trial site. If you have a child who is 18 or over and you are potentially interested or just want more information in about taking part in the study then please email Andy Stevenson at andy@reverserett.org.uk

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WE HAVE OUR FIRST WINNERS We are absolutely delighted to announce that Kate McMaster, mum to Kim, became the very first 1st prize winner of the 365 Club! The draw took place on Thursday 27th May, overseen by our wonderful independent adjudicator Kate Buckley!

2nd and 3rd prizes went to Irene Renwick and Mr Anonymous.

The next draw takes place on Thursday 24th June and YOU could be in with a chance of winning!

Our thanks to all who have joined the 365 Club so far - this is such a simple but powerful way to make an impact for people with Rett Syndrome 365 DAYS OF THE YEAR! Monthly Giving is still the ONLY guaranteed income for Reverse Rett so the more members, the more money raised for Rett Syndrome research AND the more money up for grabs each month, so spread the word!

Full details and how to join the club can be found here.

ULTRA CHALLENGES 2021 In September 2020 Ultra Challenge was the first (and only) organisation to run a Covid-safe mass participation event, pulling off their Chiltern 50 Challenge despite all the restrictions and obstacles in place!

With a tried and tested model and with lockdown slowly easing, they have now launched their full calendar of events for 2021, with 14 challenges taking place between May and October across the UK. If you’ve been longing for a challenge to motivate you or need a goal to help you get back out there, there’ll be an event for you here! Every challenge has multiple distance options and can be walked, jogged or run, PLUS there’s a virtual option for every event too, so there really is no excuse not to take part, your way! www.reverserett.org.uk/events/ultra-challenge-events-2021 www.reverserett.org.uk/events/ultra-challenge-virtual-events-2021

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INSPIRATIONAL FUNDRAISER

MARK REILLY

It was a privilege to head up to Perth in Scotland recently to run a few miles with former footballer and dad to Dionne, Mark Reilly. Mark or Mavis as he’s known in the football world was taking on his first challenge of 2021 by running 100 miles between the grounds of four of the football clubs he played for in a stellar career.

Mavis has so far raised £13,250, which shows how much people, especially the fans of his former clubs, think of him and Dionne.

He began at McDiarmid Park, home of St Johnstone, fittingly on the day they won the Scottish cup, with the first leg being a hilly 60 miles to Motherwell. The plan was then to run 20 miles to St Mirren but due to lockdown restrictions he had to head straight to Kilmarnock and Rugby Park. Mavis ended up running 12 miles in the vicinity of the ground to take the mileage up to 100.

It was fitting that Mavis should finish in Kilmarnock as he played the majority of his career there and was part of the Scottish Cup winning side of 1997. He’s also had incredible support from Killie fans over the years with his fundraising for Dionne.

Mavis received unbelievable support before, during and after the challenge. He had lots of video messages from former teammates and opponents including Rangers legend, Ally McCoist, Scotland Manager, Steve Clarke and Alan McInally. He received support from current Aston Villa stars, John McGinn and Jack Grealish, two weight world champion, Carl Frampton, Biffy Clyro drummer, Ben Johnston and even Line of Duty star, Martin Compston AKA Steve Arnott.

During the challenge he never ran alone and was supported by friend and former teammate, Kevin McGowne on his bike with wife, Monica and daughter, Nicole in the support vehicle.

He reached Rugby Park after 23 hours of running, a truly magnificent achievement.

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MAKING CHANGE HAPPEN

Mavis has so far raised £13,250, which shows how much people, especially the fans of his former clubs, think of him and Dionne.

However there’s no rest for Mavis as the next challenge is already in the diary, the brutal Marathon des Sables, 6 days and 251k through the Sahara Desert.

Mavis said at the end of his 23-hour run “I did this for my hero, my inspiration in life, Dionne, who can’t even walk 100 steps, that 100 miles were for you darling.”

You can still support Mavis for this challenge or his next one by visiting his Just Giving.

www.justgiving.com/fundraising/m ark-reilly12

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MAKING CHANGE HAPPEN

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Rachael Ste ve

I’ve worked at Reverse Rett for 11 years. It is a labour of love as I have two girls with Rett Syndrome and care deeply about so many more. I have overall responsibility for Reverse Rett operations and bring all the work we do together towards our ultimate goal. Based in Manchester.

Top talent: Spinning plates Twitter: @rebloo Email: rachael@reverserett.org.uk

CEO

Rashida Ho ss

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Started working at Reverse Rett in Summer of 2019. I am responsible for all things related to finance. My hobbies include: walking/rambling and learning new languages.

I feel very blessed to be part of a fantastic dedicated team!

Top talent: Meticulousness Email: rashida@reverserett.org.uk

F i n a n c e O ffic e r

Beth Johns s

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In a former life I was a secondary school English teacher, but after my daughter was diagnosed in 2010 I knew I needed to be involved in bringing about change. I’ve been privileged to be at Reverse Rett since 2014, responsible for running and developing our events and campaigns.

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Top talent: Relentless perseverance Twitter: @trying2bbrief Email: beth@reverserett.org.uk

I am very proud to work for Reverse Reverse. Reverse Rett is not just a charity, it is a big family full of amazing people that are joined by Rett Syndrome. I'm so happy to be a part of this.

Top talent: Gets the job done Email: ewelina@reverserett.org.uk

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MAKING CHANGE HAPPEN

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I began working for Reverse Rett in 2012 after 23 years as a Golf Professional. Golf is an individual and often selfish game whereas my job of helping families on clinical trials for Rett Syndrome and working with Team Reverse Rett fundraisers is very much a team effort.I have two girls with Rett Syndrome and am passionate about the work we are doing and the progress being made.

Top talent: Die hard stamina Instagram: bald_stevo Email: andy@reverserett.org.uk

Having joined the Reverse Rett team in 2017, I can honestly say it's the best job I've ever had. I've had the privilege of meeting so many inspiring people.

Amongst other things, you'll usually find me designing this, that, and the other.

Andy once said I was the 'golden nugget', I'll take that!

Wesley Havi ll

My hobbies are photography, graphic design, traveling and arty-farty stuff.

Top talent: Man who knows how to get things.

Email: wesley@reverserett.org.uk

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I joined Reverse Rett about three years ago. I have worked my entire adult life, first in the music business, then in helping people change their lives through weight loss, then for a charity looking after Holocaust survivors.

When my granddaughter, now 12, was diagnosed with Rett Syndrome 10 years ago, I was keen to do whatever I could to help. It’s a wonderful organisation doing incredibly valuable work to help our girls and great to be part of such a lovely team.

Top talent: Knows people who know people and gets to know more people Email: hazel@reverserett.org.uk

Peter Dine

I grew up with two sisters with Rett Syndrome. After seeing the contributions of others I didn’t feel right standing at the sidelines so I now run the Reverse Rett Instagram and try to reach as many people as possible whilst delivering information about what we do in a new and compelling way.

Top talent: Lateral thinking Instagram: @reverserett Email: peter@reverserett.org.uk In sta g r a m G uru 17

MAKING CHANGE HAPPEN

FREE WILLS NETWORK In April, we were absolutely delighted to become members of the National Free Wills Network. This means that we are able to offer our supporters the chance to have their simple Will written for FREE via participating solicitors across the UK. Here’s how it works: let us know that you are interested in using this offer. the National Free Wills Network send you all the info you need as well as a list of participating solicitors close to your home. you make an appointment with your chosen solicitor who then writes your simple Will free of charge.

There is no obligation to leave a gift in your Will to Reverse Rett, but of course any gift, no matter how small, is incredibly gratefully received and will help transform lives for future generations.

To register your interest please either complete the form here or email beth@reverserett.org.uk

WINTER GALA As lockdown eases and we all start to get out and about more, the prospect of an in-person London Gala becomes increasingly tangible and exciting!

Please SAVE THE DATE for Friday 3rd December when we will be returning to Church House, Westminster, for our 11th annual Winter Gala - an evening of elegant, festive celebration to kick off the long-awaited party season with a glittery bang!

Fabulous sponsorship opportunities are available and we are already on the lookout for fantastic items for our silent auction.

If you have any ideas or contacts for either of these, or if you would like to be involved in any other way, please email beth@reverserett.org.uk

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MAKING CHANGE HAPPEN

REVERSE RETT CONNECT UPDATE

BY BETH JOHNSSON

Since January, it’s been hugely exciting to get our new ‘Rett Connect’ initiative off the ground. This concept, created in response to the increasing isolation of families during lockdown as well as the identified need to give families access to clinical and research information, is an umbrella for all our ‘connect’ provision.

This includes our parent to parent mentoring scheme, our regular ‘Bitesize’ sessions and our monthly Family Forum.

All these initiatives aim to connect, inform and empower families in their daily lives.

We’ll be taking a bitesize break over the summer, but the sessions will return again in September - if you have any specific topics you would like to see covered, please do get in touch via beth@reverserett.org.uk

Throughout March, April and May we’ve run 9 Bitesize sessions, covering Covid19, well-being, common health concerns, movement disorders, optometry, scoliosis, gastrostomies, reflux and even a yoga session!

“It was lovely seeing other parents. It helped me feel not so cut off, lonely or isolated.

Everyone's advice, personal experience and suggestions were, for me, invaluable. Found out about so many practical things that could help ease our daily lives. I felt so good at the end of the session too: it was a very positive, unexpected pick-me-up. I highly recommend more such sessions!”

Meanwhile, we have also launched our Family Forum sessions - open, parent-led discussion platforms where families can connect, share experiences, ask questions, listen and laugh together! Lisa, one of our attendees, sums it up beautifully:

We’re hugely grateful to every one of our fantastic speakers and parent-panelists who have made these sessions possible and also to all of you who have attended and contributed to the discussions. We hope that you have found them as valuable and informative as we have!

You can book for our next Family Forum session on Wednesday 9th June at 12pm here.

In June, one further session will look at the serious issue of chest infections - a problem which many of our children struggle with and which is of particular concern in these Covid times. You can find full details and book your free place(s) for this session here.

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REVERSE RETT MATTERS

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REVERSE RETT PODCAST Have you listened to the Reverse Rett Podcast yet? I really loved recording this conversation with Sara Meredith who speaks so openly and honestly about life with her daughter, Livvy and Rett Syndrome.

You might think this will be a depressing listen because Sara’s daughter Livvy died suddenly at the age of 11, but it’s honestly inspiring more than anything with Livvy’s bright personality filtering light all through the conversation.

After Livvy died, Sara and her husband Adrian, went on to fostering and eventually adopted a gorgeous little guy, Daniel, who has his own complex needs, but fits right in to the hard-loving Meredith family.

Hear more about how this came about and Sara’s journey on Episode 18 here.

As always, please let us know what you think: rachael@reverserett.org.uk

“I think Rett Syndrome is one of those ones where you face loss at so many stages. You lose the skills, you’ve got the regression, then the seizures start and you lose some more, then the mobility. Not saying it happens to all the girls but it’s just mean. As soon as you get used to a new life, a new way of living, it changes.”

- Sara Meredith, Episode 18

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.

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

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.