Can you Rise for Rett? 


2024 is already proving to be an exciting year for the UK Rett Community with two Rett gene therapy trials approved to start right here in the UK. 

But until the trials are able to demonstrate that these new treatments are safe and effective and ultimately recommended for funding by NICE/SMC etc., our work continues. Before we can even get to that point, there are some key things that we need to do: 

We need to find and register at least 70% of the estimated UK Rett population on the Rett Registry UK. This is because NICE/SMC want to see that the actual patient population marries up with the disease incidence.  

We need to continue working with the pharmaceutical companies working on emerging treatments for Rett to ensure that the UK is recognised as a premium location to hold clinical trials of disease-modifying treatments for Rett. 

We need to build tools and resources to support the campaign for UK regulators and payers to recommend funding for these treatments when they are proven to work so that there is minimum delay to the wider population accessing emerging treatments as and when they are proven to be safe and effective. 

We need to help develop a cohesive network of trial sites and clinical teams to deliver emerging treatments once they are demonstrated to be safe and effective through clinical trials. 

We need to continue funding the CIPP Rett Centre who are the only  clinical treatment centre dedicated to managing neurobehavioral health in Rett syndrome in the UK. The CIPP Rett team will be vital in making the most of clinical outcomes in older and or more complex patients with Rett syndrome, post access to emerging disease modifying treatments and critical now, in helping patients stay healthy until these treatments become accessible to them. 

We need to continue to share the latest information and resources about staying healthy with Rett syndrome to ensure that as many of our children, young people and adults with Rett as possible are here to benefit from these emerging disease modifying treatments as they become available.

At Reverse Rett, we are a small team but we achieve a lot with the funds we raise. However, unlike some other rare disease charities, we have to raise more than our running costs so that we are able to invest in programs like the CIPP Rett Centre, the Rett Registry UK, our outreach work and ongoing lab research via RSRT.  

We do not receive any government funding and we do not have a dedicated Trusts and Foundations Fundraiser. The majority of funds we raise come from smaller events and challenges, people having cupcake sales, or asking for birthday donations from Facebook. 

In the past two years, we’ve started doing a lot of trekking challenges including challenges in the Sahara, Iceland, the Lake District, the Jurassic Coast and the Glasgow Kiltwalk. Many of you have taken part in different runs and the participants have overwhelmingly enjoyed them. The camaraderie has been fantastic and the chance to meet and spend time with other parents living with Rett has been hugely therapeutic for everyone involved. 

We have four Reverse Rett team challenges taking place this year and we already have lots of families and supporters joining. Newly diagnosed families are joining forces with families who have been battling Rett for years and both are bringing their wider family and friends along with them to build a formidable force. 

First up reverse Rett Co-founder, Andy Stevenson will be leading a team in the Lake District Ultra Challenge on the weekend of June 8th. There are different distance options and people have signed up for both the 100k continuous option and the 50k one day distance. 

On the 3rd August Kath Thorne who is Alba’s auntie will take part in the South West Coast Challenge. It’s a 50k trek and people are welcome to join Kath and her friends. 

On the weekend of 7th September, Reverse Rett Co-founder, Rachael Stevenson, some Iceland 2023 teammates and other new team members will be taking on the South Coast Ultra Challenge, 100K over two days.  

If you prefer to run, we have 4 guaranteed places for the iconic Great North Run on Sunday, 8th September.

We also have a growing team, led by Daisy’s mum, Emily Marsden and guaranteed places in the Royal Parks Half Marathon on Sunday 13th October. There isn’t a more scenic half marathon than this one. The stunning 13.1 mile race takes place in the capital’s world famous landmarks on closed roads, and four of our eight Royal Parks – Hyde Park, The Green Park, St. James’s Park and Kensington Gardens. It’s a race that always sells out quickly so if you want a place please get in touch with Andy Stevenson at [email protected] ASAP. 

If you’d prefer to do your own thing or choose your own challenge to do with family and friends then please check out the Events page on the Reverse Rett website. It doesn’t have to be a physical challenge. Plenty of Reverse Rett fundraisers find other creative ways, using their own individual skills and interests to rise for Rett.  

Here are some examples below: 

Aden and his dad, Brendon spent last Summer walking the length of the Thames in stages in honour of Shona 

Ray Holden has held a yearly Charity Golf Day at his Golf club since 2012 in honour of Beth 

Anna held a raffle at college in honour of Edith 

Becky Whinnerah designed Reverse Rett Christmas cards in honour of her daughter, Ava 

The future has never looked better for people living with Rett syndrome and their families so please get involved this year and Rise for Rett! 

If you are new to fundraising or need some new ideas to help you get started or to maximise your fundraising then please check out the ‘Art of Fundraising’ workshop with Andy Stevenson and feel free to get in touch if you have questions or need some help or inspiration.