What a year! Thank you for standing with us


By Rachael Stevenson

2020 was the year no one could plan for. The virus has turned so many lives upside down. We want to offer our deepest thanks to you for standing with us.

In a year of so much bad news, let’s also take a moment to reflect on all the ways that with your help, we’ve shifted gears and kept Reverse Rett working for everyone with Rett Syndrome, despite all things Covid-19.

With your help:

We made a swift response in the early days of the pandemic, providing guidance to families re shielding and other issues in the form of CPMRS recommendations, website based information including FAQs and downloadable resources on Covid-19 and mental health, stress, template letter re end of life care and DNACPR letter for people with Rett Syndrome, as well as providing letters to employers for parents and carers shielding children and adults with Rett.

We carried on funding the new national clinical treatment and research Centre (CPMRS) in London, upholding our £1million commitment in funding for the Centre, from 2019-2022, despite the dramatic dip in fundraising. 

We supported a CPMRS pivot to telemedicine in April which means that this team of experts are now monitoring and managing the health of more patients with Rett nationally, than was ever expected in person. 

Prof Santosh and his team at the CPMRS

We moved all meetings online. The less travel, the more productivity, the more fresh faces, the more brain power…. Online face to face meetings have revolutionised communication and collaboration like never before and at RR we have seized the moment and taken almost all our phone calls and meetings to Zoom and Team. From twice weekly catch ups with the Chairman to Board meetings with all 8 trustees, to monthly CPMRS monitoring meetings to UK Rett Disorders Alliance quarterly catch ups, this new way of meeting up and communicating has changed so much for all of us.

We moved our North West Discovery Day online, giving more families, carers and clinicians than ever, access to research updates, best practise clinical insights and clinical trial experiences from U.K. doctors, researchers and patient representatives. Without the need for childcare, it’s made us rethink all our Discovery Days in the future and the need for us to have a virtual option even when in-person meetings can happen again.

We worked on rebooting our Patient Registry. The Reverse Rett UK Patient Registry has been so important in getting UK trials off the ground and getting our children and adults with Rett into those clinical trials. Planning/redesign in the last few months means we’ll be able to share a new all singing and dancing registry with you in the Spring.

We carried on with clinical trial preparation. The Anavex clinical trial may be paused but patients are lined up and ready to go when social distancing allows. Reverse Rett has been running patient identification, communications, pre-screenings and referrals for trial sites in Manchester and London since early summer, ensuring that as soon as trials can take place again, there will be no further delays.

We worked together with other patient groups to drive campaigns and clarification to uphold the best interests of patients with Rett Syndrome while we live through these difficult times. This includes; clarification on Clinically Extremely Vulnerable status and vaccine access in collaboration with Rett UK, Vitamin D role in respiratory infections in Rett Syndrome and more.

We set up the Reverse Rett Podcast, giving us a new way to connect with everyone out there who cares about someone with Rett Syndrome. What we’ve learned more this year than ever, is that people need people. Listening to someone else’s story can provide useful information or insight and help us feel less isolated.

Your support means our work hasn’t stalled. We’re more determined than ever to make things better for children and adults with Rett.

Thank you to you, our supporters for making all this and more possible. 

Ten Gifts of 2020

Reverse Rett Resilience Fund. In March, Reverse Rett income dropped by 87%. Our Resilience Fund was launched in April with the Sharpe and Buckley families pledging £5000 respectively in matched funding to the campaign which went on to raise £25,853. This ensured that Reverse Rett key staff members including our Executive Director and Finance Officer could remain in post to keep things going whilst the remainder of the staff team were furloughed to protect research funding.

The 2.6 Challenge

In April, we also saw a dramatic rise in virtual fundraising as so many people who had trained for challenges, switched up and reimagined their event, which they now had to endure alone in their local area, to something related to the 26 miles of the London Marathon. These people who had every right to have their own meltdowns and ditch their original fundraising plans, raised  over £7000 for Reverse Rett in our darkest hour.

Lily who did 26.2 laps of her living room in the 2.6 Challenge

Birthdays weren’t cancelled. When everything was stopped, birthdays still happened (albeit at home) and so did birthday fundraisers. So many lovely people celebrated at a distance with family and friends giving in support of their special day. Wishing a better birthday next year to all our kind people who raised over £10,000 by donating their birthday in 2020.

Membership of the Association of Medical Research Charities (AMRC). AMRC membership is notoriously difficult to get and it took us all the way until 2018 to get it.  But this year has shown us how important this membership is to our small organisation. AMRC has been fighting the corner of medical research charities great and small throughout the year, campaigning for government help for the more than 70 disease specific non profits who have missed out on emergency charity funding during the pandemic, because they are focused on research which still needs to happen.

10 for 10 campaign. Reverse Rett was 10 years old in July! It wasn’t exactly the celebration we’d planned but it was lovely to look back, in that moment to reflect on how far we’ve come as an organisation and the progress made in Rett Syndrome research. It also gave us an opportunity to share memories from the past 10 years on social media. The £10 for 10 years drive throughout the month raised an amazing £8688 in just 31 days.

The 2nd London Gala in 2011

David Ford Long time Ambassador of RR David Ford typically does one gig a year, his Milk and Cookies Gig for RR which we are incredibly grateful for. This year, knowing things would be more difficult than ever, he did 3 of these gigs live from his garage raising £21,368 and the spirits of everyone watching from their locked down living rooms. And, Rett families everywhere, he wrote you a song: Proceeds to benefit Reverse Rett

David Ford singing his heart out for Reverse Rett

The London Marathon finally happened in October. In a normal year, Reverse Rett can never get places in the London Marathon but this year we had people, all running independently, all over the UK, but together in spirit, running the full 26.2 miles and raising almost £5000.

Carl Rawes who lead a team along 26.2 miles of the South Wales Coastal Path

Big Night In. Rather than not run a Reverse Rett London Gala at all, we went digital with our annual London event, bringing music, auctions, inspiration and more right into your living room. Despite the challenges, we were so proud to welcome an audience of almost 2000 people, so many of whom would never be able to attend the gala in person. We are so grateful to everyone who watched and gave, raising over £67,000.

Russell and Romesh appearing on the Big Night In

You gave BIG on the Big Give

Things were looking very difficult for the Reverse Rett Big Give Christmas Challenge this year. Everyone has less money in 2020, with the economic impact of Covid affecting employment and the cost of living amongst everything else. But our supporters knew that rather than asking for more money, we just needed more people to take part, more people to share and more people to give for us to hit our target….548 of you knocked it out of the park, about 400 more people than in 2019, raising an unbelievable £101,719 and securing RR support for the CPMRS throughout 2021.

Your generosity. You came, you saw, you gave. We can’t ask for more than that. Thank you for being with us through the ups and downs of this year, we couldn’t have got through it without you.

Wishing you a happy and peaceful holiday season and here’s hoping 2021 is a better year for us all.

From all of us at Reverse Rett.