Reverse Rett Matters November 2022

Introduction

Taysha Gene Therapies update Congratulations to Professor Santosh Our fundraisers of the month: The Saharan Sole Sisters Saharan Sole Sisters Trapped By Rett Campaign October International Rett Syndrome Awareness Month Could it be Rett Syndrome? Together for Change / Rett Registry UK - Registry Status Stay safe: breathing issues in Rett Do you aspire to run a Marathon? By Andy Stevenson

Jurassic Coast Men’s Challenge 13/14th May Lake District Ultra Challenge 10th/11th June

Winter Gala: so many ways to join! Big Give

Dear Friends,

It’s hard to believe it is already November and we are heading full pelt into event season, preparing for our two biggest fundraisers of the year, the Big Give Christmas Challenge and the Reverse Rett Winter Gala Time seems to have gone faster this year Rett Syndrome Awareness Month and the 22 strong Saharan Trek made October whizz by for our team.

In this edition of Reverse Rett Matters, you can read about the October campaigns including, our‘Could it be Rett Syndrome?’ infographics as well as two collaborative campaigns we ran with Rett UK. We are also including an article about the somewhat controversial November campaign, #TrappedbyRett which has generated plenty of discussion and hopefully caught the eye of many who have never heard of Rett Syndrome as well.

As we enter into our biggest fundraising drive of the year, we are all too aware that the cost of living crisis has hit many people very hard. Despite the great success of the Saharan trek, this has been another difficult fundraising year for Reverse Rett. At the same time, demands on the organisation have grown with the Reverse Rett funded CIPP Rett Centre at King’s College Hospital under increased pressure due to the NHS being squeezed from different directions.

We are working with the CIPP Rett Centre to help manage these issues. But these difficulties do highlight some of the pressures we continue to face as an organisation in the wake of the pandemic. Reverse Rett receives no government funding. Community fundraising is the only way we can continue our work, bringing clinical trials of new treatments to the UK run the Rett Registry UK and continue to support international Rett Syndrome research focused on next generation curative strategies. All of these elements of the work we do are important but none of it can happen without your help.

As we move into this time of emerging treatments, more is demanded of us than ever, more funding, more collaboration, more challenges, more awareness campaigns, more energy and drive. This is not the time to take our eyes off the ball. Any day now, we hope to hear news that the first in human gene therapy trial for Rett Syndrome has started.

These are potential therapies that could change the trajectory of this disease for young children and significantly improve the lives of those who already live with the devastating symptoms of Rett Read on to find out more about the work we have been doing with Taysha Gene Therapies to ensure that they know what we know; that these treatments for Rett are essential and we need them now

Thank you for your continued support.

TAYSHA GENE THERAPIES UPDATE

Since Taysha Gene Therapies was given the green light for their clinical trial of TSHA 102 for adults with Rett Syndrome back in March this year, we have all been on the edge of our seats waiting for the news that the trial has started.

At the end of October, there were some concerns from families because of the announcement that pharmaceutical company Astellas Gene Therapies has made an investment to enhance development of Taysha’s two lead programs: one of which is the Rett Syndrome program.

At Reverse Rett we continue to have regular and direct communication with Taysha re their Rett program TSHA 102 As you will see from the community letter, this is a positive development for the company and provides a much needed cash injection which will no doubt boost the development of these critical programs at this important time

We are looking forward to sharing more news with you about the clinical trial in Canada in the next few weeks.

TAYSHA TALK

WITH ANDY & RACHAEL STEVENSON

On October 28th Rachael and Andy Stevenson provided a ‘Taysha Talk’ to employees of Taysha across the whole company. The interview with Patient Advocacy Lead, Chelsea Karbocus (pictured below) was focused largely on Andy and Rachael’s personal experience with their daughters, Amber and Beth, who both have Rett Syndrome and on the family’s hopes for emerging gene therapy treatments.

This kind of work helps to convey to those working on treatments for Rett, many of whom may never have met someone with Rett Syndrome, how much we need treatments for our loved ones with the condition and what they live with every day, until those treatments become available

Rachael and Andy,

As we embark on our first gene therapy clinical trial in adults with Rett Syndrome, today's talk was an important reminder to put the needs of the patient first. This is always true, but especially so when the patient cannot advocate for herself. I will keep your words close to my heart and reflect them in my actions as I work with the site to support families participating in the study.

Thank you for sharing

Seesomemore commentstheyreceived afterwardsbyscanning orclickinghere

- Kristin Phillips

Chelsea Karbocus

Rachael & Andy

CONGRATULATIONS TO PROFESSOR SANTOSH

Congratulations to Professor Santosh, who won the 'Digital Innovation Award for Best Digital Intervention' at the Association for Child and Adolescent Mental Health Awards last Friday.

The ACAMH Awards aim to recognise high quality work in evidence based science, both in publication and practice, in the field of child and adolescent mental health.

To win a ACAMH Award is a prestigious recognition of those who are at the forefront of the advancement of child and adolescent mental health research, and practice.

We are proud to work alongside Professor Santosh and his team at the CIPP Rett Centre, their work over the past 3 years has been invaluable to the patients they work with and the wider Rett community

ProfessorSantosh, RachaelStevenson (CEO,ReverseRett), JohnSharpe(Headof Trustees)

INSPIRATIONAL FUNDRAISER THE SAHARAN SOLE SISTERS

Our fundraisers of the month just had to be The Saharan Sole Sisters who walked two marathon distances in two days in the oppressive heat of the Sahara Desert.

The 23 strong team gained incredible support and respect from their families, friends and the Rett Community and raised an amazing £76,976 plus gift aid which has really boosted our fundraising income after another difficult year for small rare disease charities like Reverse Rett

The resilience shown by the team was inspiring with a lot of illness, dehydration and serious blisters hampering team members The important thing is that that they persevered and made it back home safe and sound.

Huge thank you to all the team, many of them parents and several parents to children or adults with Rett Syndrome, for leaving their families and going through the mill to support Reverse Rett.

Deep appreciation also to the wonderful 1315 donors who have made this adventure such a huge success.

Well that was pretty gruelling, but we did it! 84km over 2 day!

Incredibly hot and exposed conditions led to several people suffering from heat exhaustion, sickness and dehydration, despite drinking 5 6 litres of water a day. Others had extremely sore blistered feet, twisted ankles, broken toes, low blood sugar, palpitations and several had to be picked up by medics on the trail

Nothing can really prepare you for trekking on so many different terrains (large rocks, gravelly sand, baked earth and dunes) for 7+ hours each day, and having so little sleep for three nights The tents were so closely packed together that we may as well all have been in one big tent.

I think we were all relieved to pack up and leave the campsite for the 8 hour journey back to Marrakech one of the women on my bus said she was “scarred for life” by the experience!

I feel relieved to have come through it with “only” seven blisters, one bout of nausea, some heat exhaustion and tummy cramps on day two.

I’m sure I’ll look back on it one day with rose tinted glasses, but for now, I’ll leave you with the wise words of my travel buddy and walking partner Kate McMaster

“This is just BRUTAL… it’s HORRIBLE! What were we thinking?!”

We did it!!!

Through heat, sand, sun, blisters, dehydration, lack of sleep, hitting "the wall", and worse, our Saharan Sole Sisters have currently raised over £70,000 following our epic challenge in recent days.

With determination, and our belief that change is possible for our Rett girls, we have given our everything to this event.

Catherine McKinney

Ann Baty

Since I crossed that finish line it has felt as though I have been viewing my life from a distance The drive to Marrakesh, the quick dash to the souks, the after party, the flying home, the return to work, the being Mum, the retelling of the experience... has all felt as if it was happening to someone else. A disconnect and emptiness Perhaps created through lack of time and space to make sense of things Perhaps sheer exhaustion.

And then I saw this quote: "When we get home, home is still the same, but something in our mind has changed, and that changes everything."

It reminded me of the feeling you get after your children have been seriously ill or when you begin that return to light after a significant bout of depression: On the outside looking in life is as it's always been, but from the inside looking out the landscape is altered.”

Two very different marathons completed alongside 22 others for Reverse Rett! It has been a challenge and half I have enjoyed most of it (not the blisters, or the rock climbing, or sleeping in a tent or having cold showers) and have met some amazing people along the way.

I’m super glad to be back home to my family and home comforts though. Fish, chips and curry sauce with a cup of tea.

Thank you to my family and friends for the support and kind words whilst I’ve been out there The last 8km were tough in open desert with no one else around, and I’ll be honest, I just wanted to lie down and wait to be rescued but I made it across the finish line (then collapsed face first in the sand).

Rachel Solly

Hayley Rutherford

Second day and another Marathon! This day was much, much tougher, and I did have to dig deep to finish! I did feel so accomplished though when I had finally finished the challenge

Not only did I feel a little bit proud of myself, but I felt like I had done something useful to help my daughter, and others that suffer with Rett Syndrome

Gabrielle is now on her way back home from college, and I CANNOT WAIT to see her!!

“I'm still processing the whole experience: the landscapes, the culture, the people, the challenge itself, the support we've had Somehow, I've escaped without blisters, injuries or illnesses and feel very fortunate to be dealing only with a persistent headache, a desperate need for sleep and the tendency to keep bursting into tears (this is normal, right?!)

The challenge was incredibly tough, but whilst I don't think I had underestimated the physical impact, I had most definitely under estimated the emotional one. As mad as it may sound, I am missing the desert. The singular focus of getting from A to B, the tangible sense of achievement, the quiet (!), the camraderie and the shared sense of purpose these things are not so easily found in the daily realities of life with Rett Syndrome.

The support of others also continues to overwhelm me: not just through donations, but also through messages, notes through the door, unexpected gifts, heartfelt hugs. Something about this challenge and the team seems to have captured people's attention and generosity and it is very humbling indeed.

There is no doubt that every one of us out there had to dig deep to make it to the finish line, or indeed to the start line! But none of our efforts would impact research or actually help to speed treatments for Rett Syndrome, if so many of you hadn't chosen to dig deep too. Thank you, one and all!”

Ann Baty

Ellen Everett

Beth Johnsson

Three quarters done, at the lunch stop on the second day, I was starting to feel a little tired. Usually my first port of call is the loo but I was desperate to pull my boots off and change my socks. I didn’t feel hungry or thirsty but I knew resting time was limited so I got up and got some food

After eating, I wandered over to the toilet tents, saw a wicker basket and threw up into it After a few more wretches, I lifted my head and felt ready to carry on. A medic happened to be passing. He suggested checking my vitals and sauntered off to get some equipment.

His face changed when he took my blood pressure He told me I was severely dehydrated and the numbers didn’t look good He said if there were no improvements in 15 minutes they would need to cannulate.

‘This is finished for you now,’ said the doctor, as he snapped my hand at the wrist to get into the vein

After the IV was done, I was evacuated straight to base camp to the main medical tent where there was further back up. Within three hours I started with gastro entiritis.

I have learned something through this challenge that I want to share, hopefully as a red flag for other Rett parents, or others who are living similar life situations supporting elder family members or those with disabilities or complex health needs

I didn’t go out to the desert to complete this challenge. After having Covid just ten days before, I knew it was very likely that I wouldn’t be able to do the whole thing I’d decided to just do what I could each day, take it one rest stop at a time and stop when I felt bad or unwell

But after years of looking after someone else so intensively, we can unlearn how to look after ourselves, how to even recognise our own illness, discomfort or pain, even when we are in a diabolically dangerous situation such as that in which I found myself in the Sahara

For parents of children or adults with Rett Syndrome, life is an endurance test; physically, mentally and emotionally. After year of being a single parent and never being able to say I just can’t face it all today or I don’t feel like getting up, sometimes we just don’t realise when we need to stop This comes from years of having illnesses, maladies and down days and still having to get up and do it all for that person because there is no other option

To my fellow Rett parents, comrade parents of children with complex disabilities and medical needs and carers everywhere, when doing these challenges or even just living your everyday lives dig deep, yes, but into your physical needs, your wellness and your own health

RachaelStevenson CEOReverseRett

The recent announcement that the Reverse Rett campaign #TrappedbyRett has hit the national newspapers caused some controversy within the UK Rett community.

The campaign was developed pro bono for Reverse Rett by London based creative design and digital marketing agency, Core Marketing Partners Managing partner, Mike Jones is a close family friend of six year old Elsie who inspired the campaign Elsie has Rett Syndrome and the eyes featured in the campaign still images are hers.

The adverts will be in a selection of daily newspapers and on trains around the country in the next few weeks and months.

The purposes of the campaign are to:

Drive public awareness of Rett Syndrome

Drive families and carers of affected individuals to the Rett Registry UK

Ensure more people with Rett Syndrome can access emerging treatments

Broaden the fundraising reach of Reverse Rett in the press and on the train networks

MikewithElsie

Mike Jones says, “This campaign is designed to be hard hitting to gain attention and raise awareness of Rett for the above reasons, however, it is also a true representation of my relationship with Elsie

From a young age Elsie and I have had a connection, I know she is an intelligent young lady who wants to laugh and have fun.

She loves to dance in my arms (though she is a bit big now) and she doesn’t want to be treated as anything other than a six year old girl.

I can sense when she is unhappy or angry from her eyes, I also love the side eye she gives my wife, it feels like she is literally saying “he’s mine to play with for now, go away” this makes us all laugh, which makes her happy. It is upsetting to see such a beautiful and intelligent girl (and the whole of the family) struggle with the body she has been given To me, my beautiful Elsie is trapped, that doesn’t mean she is any less of a person inside and I look forward to being part of her family life until she tires of me

I realise this may not be the exact symptoms all children with Rett have, but it is difficult to get everything across in a visually impactful way on a A4 advert that needs to grab the attention, in a world full of advertising

Our mission at Core is drive as much awareness as possible to help all children with Rett as we want a world where every Elsie, or Edward, can dance ”

At Reverse Rett, we have learned over the last twelve years that catching the eye of the general public regarding a rare disease like Rett syndrome is extremely difficult. Complex multi system disorders like Rett are hard to sum up in the few words these kinds of poster board advertisements allow.

Whilst there has been a great deal of positive feedback about the campaign and its reach in engaging the public, there has also been some criticism of the campaign, particularly around the use of the word, 'trapped.'

Here, Reverse Rett Co-Founder and CEO, Rachael Stevenson shares her thoughts:

It is difficult to make the case that Rett Syndrome, without substantial intervention, does not trap those affected and severely impair their ability to communicate

Most individuals with Rett syndrome either never develop any speech or lose the few words they may have acquired before they are 24 36 months old.

These children also typically lose purposeful hand use which impairs their ability to use other manual communication methods such as sign language or picture exchange systems.

Rachael with daughter, Amber

Whilst some individuals with Rett Syndrome are able to access the vital communication support and technology that may enable the family to explore and develop their child or adult’s communication skills, without this intervention, and critically without active communication partners to help to interpret, understand and develop the often subtle communication of the individual, the person with Rett Syndrome will typically remain unable to be heard or understood.

Whether this predicament should be defined as ‘trapped’ or not can only be assumed by those of us who are not ourselves without a means to communicate.

As the mother of a 27 year old daughter with Rett, I have long lived with, cared for and loved a baby, little girl, teenager and now, young woman with Rett with all my heart

I have watched her grow and change, maturing into an adult daughter in whom I seek solace, comfort and dynamic company despite her apparent limitations.

Amber uses every possible means of non verbal communication she has available to her from her eye gaze, the tilt of her head, the raise in her eyebrows, her upper body control and more to express herself.

She still needs someone else to receive and interpret those gestures as we all do.

The difference for those of us without Rett Syndrome is that we can cement our opinions, beliefs and expression, thoughts and dreams through spoken and or written language. Most individuals with Rett syndrome cannot.

Even with all these other means of non verbal communication and even with the basic use of eye gaze technology, the majority of individuals with Rett Syndrome are not able to fully express themselves; to be heard and understood by another human being.

Does this mean they are trapped?

Only they can say if they are trapped. Except they can’t, because if they could, they would, de facto, not be as trapped as those who can’t express that at all.

So we can only consider our own feelings How we would feel in such a situation, with only our expressions and gestures within the context of a body that repeatedly hinders our very ability to stay awake, breathe, eat, digest food and yes, communicate through seizures, dystonia and dyspraxia and all the other myriad symptoms we’d have going on

If it was me that this had happened to, I would feel trapped. Trapped and frustrated and unheard and misunderstood, at least a thousand times a day. We all want other people to know who we are, what we think and what matters to us as evidenced by the many varied thoughts, comments and opinions shared about the campaign since it launched

As also evidenced by the response to the campaign, not being understood, not having your position or motivations acknowledged and respected, jars with us all. Even those of us who have 170,000 words at our disposal

This may be a good time to take a moment to appreciate our ability to communicate, even when we disagree. It is an astonishing gift that we can break these issues down with such specificity and nuance and hopefully, understand each other a little better after hearing what the other has to say. This is the kind of interaction, reciprocity and autonomy is unavailable to the vast majority of individuals with Rett Syndrome, however much we may wish it was not so

This is why we will continue to drive the message home that everyone with Rett Syndrome should have access to treatment and interventions which can improve their lives, giving them as much freedom, equality and autonomy as possible

It’s why we value and appreciate the work of our colleagues at Rett UK, who strive to explore and expand the communication abilities of individuals with Rett Syndrome of all ages. There are many programs which Rett UK offer which can help the families and carers of people with Rett Syndrome of all ages enhance their ability to communicate You can find out about some of these on the following page, along with a statement from Rett UK CEO, Rob Adamek

“We are only too aware of the frustration of people with Rett syndrome and their families as they continuously battle to get the support they need and are entitled to. Much of that frustration comes from professionals’ inability to recognise potential or accept that it is an antiquated notion to establish intelligence purely by proficiency in motor skills and/or spoken words

We believe that everyone is communicating constantly. We want to help people recognise and understand that communication. We have seen that just with a recognisable and consistent “yes” and/or “no” signal people can express feelings and opinions and access fun and friendship

At Rett UK, we strive every day to improve the support available for people with Rett syndrome We offer support to families who have become “stuck” with communication. We do not expect everyone to become a proficient eye gaze user: eye gaze technology is a wonderful invention but is only one of the communication methods that people with Rett syndrome utilise We know it is not for everyone, nor even for anyone all the time

That’s why Rett UK are here: to help unleash the potential behind those eyes. We aim to help everyone recognise that whilst verbal speech is unlikely, people with Rett syndrome have much to say. We know none of this is easy or quick but developing communication skills can only help to minimise the feeling of being trapped even a tiny bit "

RETT UK PROGRAMS SUPPORTING COMMUNICATION FOR PEOPLE WITH RETT SYNDROME.

Are you a speech and language professional working with people with Rett?

Join the Rett UK Communication Professionals Network @ www.rett uk communication professionals network heysummit com

Looking for a way to get started with communication?

Here is a fact sheet about establishing a ‘yes’ for someone with Rett www.rettuk.org/wp-content/uploads/2017/03/formattedwebsite-yes-no.pdf

Rett UK CEO, Rob Adamek

At Reverse Rett, we used to think of awareness month as a bit pointless. There are so many conditions and diseases out there. It is difficult for one to stick in your mind unless you know someone who is affected. Also, there didn’t seem to be a lot of point to just sharing information about Rett Syndrome. Without action to help improve the situation, what good did talking about it do?

Things have changed now In 2022, we are closer than ever to treatments that could change the course of the condition for young children and significantly improve the lives of those already living with the difficult symptoms of Rett.

That’s why this awareness month, we focused on ensuring that as many UK children, young people and adults with Rett Syndrome have an accurate diagnosis and are registered on the Rett Registry UK

Through the 'Could it be Rett Syndrome' campaign, we tried to conjure the image of how different people with Rett might present at different ages, using both boys and girls, to open up the currently fairly restricted view of what Rett Syndrome is

We were also glad to be able to work collaboratively with Rett UK on spreading the word about Rett Registry UK and why it is so important to the work we are doing to bring about treatments for Rett Syndrome.

The two UK patient organisations also worked together to share important health information about breathing irregularities and chest infections which often affect people with Rett Syndrome of all ages, so that we could have a wide a reach as possible in sharing this potentially life saving information

COULD IT BE RETT SYNDROME?

Through this online campaign, we shared information about how different people with Rett Syndrome might be identified and encouraged supporters and their communities to share this information widely.

RETT REGISTRY UK

Whilst Rett Registry UK was built and is owned and operated by Reverse Rett, both UK Rett Syndrome patient organisations acknowledge that the Registry is a vital part of our UK readiness for clinical trials and new treatments for Rett Syndrome. That’s why in October 2022, both patient groups came together to promote the Rett Registry UK to the wider Rett community.

In October, thanks to this campaign, we had 17 new sign ups! Every person with Rett matters so please help us ensure that every one is accounted for.

Together for change

Rett Registry UK is the most comprehensive patient registry of children, young people and adults with Rett Syndrome in the UK.

The information gathered through the Rett Registry UK has helped patient organisations demonstrate the need for four Rett Syndrome clinical trials to take place in the UK to date.

The Registry enables fast and effective recruitment for and management of patients on trials, which has proven the UK a strong candidate location for future trials of emerging treatments

Demonstrating accurate numbers of patients with Rett Syndrome in the UK is also crucial in enabling patient organisations to successfully advocate for NHS funding for emerging treatments for Rett Syndrome, as and when they have been proven safe and effective in clinical trials.

If you need any help signing up or if you have any questions, please contact us on 0161 434 0585

Rett UK and Reverse Rett have worked together on smaller collaborative projects before but with new therapies for Rett Syndrome becoming a reality, a unified approach and voice is essential for our community. Representing the UK Rett community as accurately as possible has never been as vital as it is now which is why our partnership not only makes sense but is essential.

There has never been a more important time for our community to have an accurate and reliable measure of the number of patients affected by Rett Syndrome in the UK and the ability to contact them as new therapies emerge. This collaboration on the Rett Registry UK is an essential part of our work to bring treatments home for everyone with Rett Syndrome. We are grateful to Rett UK for this opportunity to work together to make this vision a reality.

Coming together is a beginning, staying together is progress, and working together is success.

Rachael Stevenson, CEO Reverse Rett

Rob Adamek, CEO Rett UK

Henry Ford

STAY SAFE: BREATHING ISSUES IN RETT CAMPAIGN

These messages were shared by both Reverse Rett and Rett UK throughout October to help families and carers keep people with Rett Syndrome as safe and healthy as possible until better treatments are available.

The 6 breathing posts were shared 68 times and they reached 8179 people, with 569 people actively engaged with the posts.

DO YOU ASPIRE TO RUN A MARATHON?

BY ANDY STEVENSON

We had a huge number of people enter the ballot for next year’s London Marathon, hoping to run for Reverse Rett. Unfortunately none of them got in!

The London Marathon is a closed shop for most charities. Since 2010 when Reverse Rett launched we haven’t even been able to get on the charity waiting list, we’ve also never been lucky in the charity ballot for just one place. The good news is for every one who has ever wanted to run a Marathon is that it doesn’t have to be run in London, there are other great Marathons out there.

Through our partnership with Run for Charity we have guaranteed places for Marathons in Manchester, Edinburgh and Brighton in the UK and Paris and Barcelona on the continent. These five Marathons take place in the first half of 2023 but if you would like a little longer to prepare we also have guaranteed places for Amsterdam in October.

I’ve run the London Marathon twice. Not because I enjoy but because it’s the one race that really motivates people to donate. My personal favourite of the ones I’ve done is Loch Ness, you just have to tell your supporters that it’s 26 2 miles whether you’ve run in London or round your back garden, the pain is the same! I’ve got to admit despite vowing never again, I’m really tempted by Paris or Barcelona.

If you’re interested in running a Marathon in 2023 then please get in touch at andy@reverserett.org.uk

JURASSIC COAST MEN’S CHALLENGE 13/14TH MAY

Having been inspired by the Saharan Sole Sisters taking on their Saharan Challenge and raising an incredible amount of money we will be taking a team of men down to Dorset for the Jurassic Coast Men’s Ultra Challenge.

There are three different funding options available and a choice of different distances. There have already been some sign ups for the 100k daylight option but if you’d prefer to do something shorter then you can choose either a 25 or 50k route.

We will be walking as a team so which ever distance you choose we will make sure we meet up and walk together. It will be brilliant for people who care about someone with Rett Syndrome to spend some time together, especially dads as we don’t always find it easy to open up about our children.

There are also various camping options available or the choice of staying in a B&B or hotel. We will be deciding in the next few weeks which option to take once we have more team members.

LAKE DISTRICT ULTRA CHALLENGE 10TH/11TH JUNE

Following the men’s Jurassic Challenge, a Reverse Rett team (of all genders!) will be taking on the Lakes Ultra Challenge on the 10th and 11th June.

Organised by Action Challenge, the route follows a 100km loop from the base-camp in Kendal, taking in Lake Windermere, Ambleside, the Garburn Pass and the wealth of forests, stunning views and lakes which this stunning part of the country has to offer.

You’ll get full support & hospitality, optional camping / hostel, medical teams on hand throughout and frequent rest stops to keep you well fuelled.

With three funding options and with 10k, 25k, 50k and 100k (continuous or daylight) options, there’s a Lake District Challenge to suit everyone!

Contact beth@reverserett.org.uk with any questions.

WINTER GALA

This year's Winter Gala is just around the corner and there are so many ways you can be part of this very special event . . .

Come and join us in person at Church House to enjoy fabulous food, fizz and fantastic entertainment from Daniel Foxx, Laura London, Richard Jones, David Ford, Annie Dressner and Thrill Collins!

Snap up a family ticket for the live-streamed show and enjoy all of the above in your pjs! Food and drinks packages for home delivery also available.

Purchase a family message slide (£50) to be shown in the room and via the live-stream, with a message and photo for your loved one with Rett Syndrome.

Purchase a large hanging banner (£250) which adorns the main event room and provides a stunning visual impact for our guests, with a photo of your person with Rett.

Place bids in our silent auction to bag yourself a fantastic prize or a unique gift for someone you love!

Grab some raffle tickets – more fab prizes and a simple way to join in!

Every ticket, every bid, every message, every raffle ticket really does make a difference and helps maximise the impact of this pivotal event. So, however you can join us, please join us!

THE BIG GIVE TUESDAY 29TH NOVEMBER

It’s approaching the time of year where any donation you make to Reverse Rett in the Big Give Christmas Challenge will be DOUBLED.

Our hardcore supporters have raised over £1.2 million in this challenge since 2010 with many of them saving up their loose change year after year ready to donate to double their impact on the work we do.

This year’s challenge will begin on Tuesday November 29th at Midday so please be ready to join us using the QR code to the right and please, please tell your friends that there is FREE money on offer, it’s not everyday that you can turn £5 into £10 instantly.

You can also download the 'Count Me In' flyer using the QR code below.

Following our Bitesize session earlier this year, our friends at The Willow Foundation have stayed in touch and are keen to offer families within our community these bespoke treat boxes for 16-40 year olds.

You get to choose from a huge range of items on offer, from sensory toys to socks, baking kits to board games, teddy bears to toiletries whichever gifts your loved one with Rett will enjoy and benefit from most!

Simply fill in the form, choose your items and wait for the box to be delivered. This is a lovely opportunity, especially in these difficult times, and we very much hope many of our families with older children/adults with Rett will take up the offer!