We are the only UK charity which provides professional support, information and advice to people living with Rett syndrome across the UK.

Over the last 35 years, we have become a lifeline to over 1200 families across the UK. The demand for our services has recently increased, with additional issues brought on by COVID-19. Since the start of the crisis our emergency helpline has seen a huge rise in support requests, the professional team has therefore extended the helpline hours from 9am-10pm across 7 days a week, overstretching its resources.

Rett syndrome is a rare neurological disorder affecting mainly females and very few males. It is present from conception and usually remains undetected until major regression occurs in early toddlerhood, when children lose acquired skills; often the ability to walk is lost or severely diminished as well as the ability to talk and feed themselves. Numerous serious health problems follow including epilepsy, a curved spine and breathing difficulties. People with Rett syndrome need 24/7 care for the rest of their lives. The complexity of the disorder puts people with Rett syndrome in the highest risk category with regards to COVID-19 infection.

We are reliant on donations from the support and generosity of the community to keep our services running, with 60% of their income generated through community fundraising. The severity of financial losses due to cancellations of events and fundraising plans is already making an undeniable impact.

In part of our drive to save some money, we have sadly had to give notice to Viviane Vayssieres, Head of Fundraising. Viviane has done a fantastic job particularly with organising two big events we had planned this year The Spring Craft & Vintage Fayre and In Conversation with Dame Evelyn Glennie. It is very much our intention to pick this up again as soon as we can and Viviane will return. We have also had to furlough two members of staff for the time being Rob Adamek, Deputy CEO and Donna Tinch, Office Manager. We have managed to get a 50% rent reduction for three months from our landlord and we are extremely grateful to other members of staff who have taken a voluntary reduction in pay during this time too. We have an amazing team here at Rett UK!

This is by far one of the most challenging times that many of us have had to face. We are doing everything in our power to pursue what little funds are out there, but right now we are predicting a shortfall of more than £50,000 in the next six months, putting the future of Rett UK in the balance.

The stark reality is, if we don't receive financial support in the coming weeks, we could face having to stop providing support, information and resources and with the pressures facing the NHS, our services for those most vulnerable in our community are needed now more than ever.

To support Rett UK and for all those with Rett Syndrome, and their families, who need us now and long into the future, please donate to our coronavirus emergency appeal.