Sarah Hamilton, Communities Manager
"I am the Communities Manager for EDS UK, my role entails supporting our wonderful volunteer Area Coordinators, delivering presentations, supporting the community and lots more! I hope that as we grow we are able to offer support and advice to everyone affected by EDS no matter where they are in the UK as well spreading awareness to the medical and general community!"
Guy Hodgson, Office Manager
"I have been the Office Manager at EDS UK for two years and my role is to ensure the office is running as it should be and to support our wonderful small team. Working for a very small organisation I also get involved in pretty much anything that is needed, be that events, marketing, exhibitions and even finances. I feel prevelidged to work for the charity, spreading awareness and hopefully improving the lives of those with EDS."
Mya Choudry, Health & Helpline Advisor
"I am the health and helpline advisor for EDS-UK. I am here to offer medical support over the telephone and email for anyone worried about EDS. I get a lot of queries regarding getting a diagnosis, advising on the best way to manage the condition and recommending what specialists would be ideal to see for that problem in particular. My wish for the EDS community would be for more local doctors to become aware of EDS, and be factually accurate with their information on how to manage and diagnose the condition. I would also like there to be more services available around the UK, for patients to be able to have the support they need to manage the condition. Most of all I wish that our EDS community never gives up hope!”
Michelle Jenkins, Fundraising Coordinator
"My hope is to raise the profile of EDS UK through encouraging people to donate to us and take part in fundraising challenges. Its truly inspiring learning and hearing about our supporters fundraising challenges and is what inspired me to take part in this years Super Hero Run!"
Kay Julier - Managing Director
"One of the things I love about working for a small charity is the variety. Even though everyone has their specific area of expertise, a lot of the time we all pull together to get the work done and this creates a great sense of team spirit. My main responsibilities are to make sure our members and supporters are well-looked after, our finances are in good order and the charity is making a difference. I spend a lot of time talking to people outside of the charity. Making sure the rest of the team have what they need to do their jobs is also essential for me."
Cathy Collier - Membership and Donations Administrator
"I look after memberships and donations here at EDS UK, as well as oversee the quality control of our health and social care information. Now that EDS UK has achieved certification of the NHS-run scheme The Information Standard, my hope is that getting the right information out there will help prevent misunderstanding and confusion surrounding EDS. Knowledge is power, and only by raising awareness can we tackle issues such as lack of diagnosis, misdiagnosis and mismanagement of this condition. I hope too that we continue to see our membership grow, allowing us to offer help and support to more brave people affected by EDS.”
Mark Redhead - Chair since 2014 - Trustee since 2014
Nigel Cole - Treasurer since 2015
Frances Gawthrop - Trustee since 2001
Angela Hunter - Trustee since 1992
Clare Robinson - Trustee since 2014
Leah Mansfield - Trustee since 2013
Erin Simons, Social Media Manager
"We use social media, our newsletters and Fragile Links as a vital way to communicate with our members and the EDS community, and also to raise awareness further afield. Our Facebook, Twitter and Instagram page is an active hub for the community to get in touch and to speak to each other, to share their experiences and to find suppport."
Nick Marks - Book Keeper since 2014
Malcolm Sevren - HR Consultant since 2013