Why do we need to do so much fundraising at Reverse Rett?

By Andy Stevenson

There is always a lot of fundraising going on at Reverse Rett, whether it’s the Annual London Gala, the Big Give Christmas Challenge or team challenges like the Action Challenge events, the Great North Run, Royal Parks Marathon, Kilimanjaro etc.

We often hear people saying that it looks like we raise a lot of money and we do, but we do a lot with the money we raise too.

This includes:

Fully funding the CIPP Rett Centre

Running the Rett Registry UK

Providing clinical trial support services including recruitment and logistics for families

Working with Pharma to facilitate UK clinical trials

Outreach to find undiagnosed and unregistered patients of all ages

Preparation for health technology assessments for emerging treatments

Providing critical health information for families so that our much loved people with Rett Syndrome stay as healthy as possible until treatments are available

Funding ongoing RSRT research programmes which will lead to improved gene therapies and cast a cure for Rett in stone regardless of what happens with current programmes

Since the pandemic, fundraising has become more and more difficult. People are giving less to charities across the board because of the combined effects of the cost-of-living crisis, war in Ukraine, increase in energy bills and more.

This means we have to run more events, campaigns and challenges to generate the same income with less resource!

There has never been a better time for children, young people and adults with Rett Syndrome and I wake up every day excited to push forward with this work. There are so many vital aspects of delivering treatments for Rett.

We can’t hold back on any of it. But we need your help to support our work.