Reverse Rett Statement on COVID-19 and community fundraising events (16.03.2020)


Reverse Rett was founded and is run by the families of children and adults with Rett Syndrome. 

We are always so grateful to the individuals and companies who support our work, whether through large scale community fundraising events, challenges, sponsorships or donations.

At the moment, our UK Rett community is under serious threat from the COVID-19 outbreak.

Our children and adults with Rett Syndrome are vulnerable to complications from COVID-19 due to underlying respiratory and cardiovascular issues. Many people with Rett struggle with repeated chest infections and pneumonia. Upper respiratory tract infections are already the leading cause of death in people with Rett.

Despite the obvious effect on the work of the charity, we are very sorry to say that we have decided that, in the interests of the people we love and all who are at increased risk of complications from COVID-19, that we should suspend all charity-wide events until further notice.

If you are someone who has planned an event to raise funds for Reverse Rett in the coming weeks, would you please take the steps you need to, to postpone or cancel this event now.

We are currently advising families of children and adults with Rett Syndrome to limit their social contacts and avoid crowds. We cannot in all good conscience, put this advice out to families and continue to endorse events going on in the name of the charity which may exacerbate infection rates and expose other vulnerable individuals to the virus.

We know the dedication and effort which goes into organising events and fundraising, especially for Reverse Rett which is not a well-known charity.  We are extremely sorry we have to make this recommendation.

We are infinitely grateful for what you have done and for your commitment to fundraising for Reverse Rett. We hope you will keep your plans alive for the future and hope you will stay with us, continuing to support our work by sharing posts on social media and if possible, by fundraising in different ways.

Thank you for your solidarity in these difficult times.

Rachael Stevenson

Executive Director

Reverse Rett