A message to our members and supporters from our CEO

COVID-19 is hitting every person and organisation in the world hard, changing the way we live and taking away the freedoms we live by. Charities are unfortunately no different and many small, medium and large charities are having to make difficult and unprecedented decisions which will affect their staff and the very people they are set up to support.

The Ehlers-Danlos Support UK is a charity which is often perceived to be larger than it is. We are proud of this – it reflects the efforts of our staff, volunteers and supporters. At our heart we are only 50+ volunteers and the equivalent of six full time staff operating from a small office in Borehamwood but reaching over 12,000 people throughout the UK. We are committed to not only maintaining the support we offer, but also improving and adapting our services to meet the unusual circumstances we find ourselves in. Hopefully you will have noticed some of these efforts already, with Sarah and Nikki working tirelessly alongside our volunteers to take many of our support groups online and delivering new weekly virtual clubs and an additional weekly peer support session every Tuesday to help members deal with anxiety. On top of this, a number of our volunteers are providing weekly online “coffee mornings” for their members and increased support through the facebook groups.

There is no doubt that over the coming weeks and months you will hear stories of charities  similar in stature and size to us having to close or at least stop services and furlough staff in order to survive and be around to fight their corner when we all return to normal life. We are grateful for generous support from organisations such as The National Lottery Community Fund, The Sandhu Charitable Foundation, The Garfield Weston Foundation, The Childwick Trust and the hard work of our fundraisers and volunteers which means we can currently continue to provide all our usual services to our members. All our staff are continuing to work from home and like many others, juggle the challenge of home schooling,  our volunteers are as committed as ever and we have no doubt that our supporters will continue to find new creative ways to fundraise and raise awareness.

Community is more important now than ever; we are reaching out to not only stress the commitment we have to supporting our members but also to ask you all to play your own part. People with EDS have for a long time been a community of their own, fighting against the wrongs sent their way and reaching out to others, sharing their stories and most importantly, helping and supporting each other. At this time we are asking you all to do whatever you can to help the community; join your local online meetings, take part in our new clubs or simply take a few minutes every day to visit your local facebook group to see if your words can help support or encourage members near you.

Stay safe and thank you for your continued support.

Best Wishes

Kay Julier

CEO – The Ehlers-Danlos Support UK

More News Articles

Charity news, patient stories, events, reearch & Ehlers-Danlos in the press