The charity is managed by an Executive Committee, as follows as elected at the May 2016 AGM. Click on a committee member’s name to send a direct email to them.
Leisa Batkin, Chair.
I am 43 and I live in Leeds with my husband and our 4 children. Our youngest, Christie is 4 and was diagnosed with DBA when she was 3 months old. She is currently on regular blood transfusions and chelation therapy.
I have joined the committee to help and support other families and have an interest in social welfare of our families and work in Health.
Jayson Whitaker, Deputy Chair.
I am one of the founder members of the charity and current support group. My son Charlie age 16 had transfusion dependent DBA, he had a transplant which failed after 10 years, so has had a second transplant 1 year ago. I have 3 other children who do not have DBA, I have been involved in DBA UK for about 14 years, my wife Michelle is actively involved in the conference organisation each year and has been for many years.
Peter Redmond, Treasurer.
I live in Jersey with my wife Trish and two children Joe 7 DBA and Holly 11. Joe was transfusion dependent and did not respond to steroids. Amazingly Holly was a perfect match for Joe so in 2012 he had a very successful Bone Marrow Transplant. We are now a very lucky, hospital-free family. I have been actively involved in the DBA Committee for the last 4 years and find it hugely rewarding to be able to help and support other families through their own DBA journeys
Martin Winter, Secretary
I live in Billericay, Essex with my wife Sarah and daughter Olivia, who was born in 2010 and was diagnosed with DBA at 6 weeks of age. Olivia remains transfusion dependent (every 4 weeks) after a failed steroid trial. We are currently awaiting a suitable match to proceed with a Bone Marrow Transplant. I have joined the committee to help provide continued support and hope to Olivia and our wider DBA family. My role will also focus on fund raising co-ordination.
June Kynoch, Fundraising Support.
I live in Chester le Street Co Durham with my husband Dave. I am a Business Admin Assessor for East Durham and Houghall College. My hobbies are Cross stitch, hand making greetings cards and the best of all is cycling. Organise the Coast to Coast bike ride to raise funds for DBA. I am the Nanna to Charlie Whitaker who was diagnosed with DBA when he was 12 weeks old.
Helen Till, Education and Welfare Support.
I live just outside Chester, in the North West of England, with my husband and two children. Lexie is 12 and DBA free, Drew aged 5 has DBA and was transfusion dependant (with 24/7 IV desferal chelation) until June 2014 when he underwent a bone marrow transplant at RMCH with his sister as a donor. I have a personal interest in education, especially the transition from pre-school to reception and I have a good overview of primary education and SEN through my role as a school governor for the past 4 years.
Stacey Skepper, Adult Patient Liaison
I’m 25 years old, I live in Lincoln. I was diagnosed with DBA just before my 3rd birthday. I responded to steroids up until the age of 19. They stopped working when I was 24. I now have blood transfusions every 4 weeks and take Exjade daily. I joined the committee last year, and look forward to following in Hayley’s footsteps and taking on the role of Adult patient liaison.
James Dent, Adult Welfare and Employment Support
I live in Southbourne on the south coast. I’m 35 years old and was diagnosed with DBA at 18 months. Currently steroid dependent, I joined the committee to help support new families and adult patients while working as a Marketing Manager.