We had a great Family Weekend this year for the 15th anniversary of DBA UK, with around 140 attendees coming to join us for medical talks, children’s activities and most importantly, meeting others with Diamond Blackfan Anaemia.
Most people arrived on the Friday evening and got settled into their cabins, then joined the committee for welcoming drinks in the bar. First we had mutual welcomes on the Saturday morning and showed the new DBA UK video to everyone –
The talks then kicked off a very busy weekend which included the following (please click the links if you would like to download the presentations) –
- Dr Josu De La Fuente – What is DBA?
- Yvonne Harrington – What to expect at clinic (no presentation used)
- Dr Josu De La Fuente – Research Overview and the Future (no presentation used)
- Katie Elwig – Nutrition Support & DBA
- Mandy Whitehead – Endocrinopathies and DBA
- Mary Alikan, Alex Foong & Qais Al-Oqaily – The Genetics of DBA
- Alison Micklethwaite – Occupational Therapy and helpful everyday items for DBA patients (no presentation used)
- Alyson MacInnes – Euro DBA Update
- Dr Noemi Roy – Patient Driven Research (PSP & PPI)
- Prof. Rob Wynn – Bone Marrow Transplants
- Dr Elspeth (Beth) Payne – Zebrafish Research Update (Presentation Forthcoming)
- Martin Winter – Fundraising Update and Support
We had plenty of opportunity for chatting to each other, either around the campfire and in our own private bar area with cheese and wine! There are plenty of pictures from the weekend on the private Facebook group – “Diamond Blackfan Anaemia in the UK”, which you can request to join if you are not already a member.
We have received good overall feedback from this year’s family weekend (available here) but realise there were some weaker areas and are already taking steps to improve these for next year.
The charity AGM and elections were then held on the Sunday, run by Leisa Batkin, Peter Redmond and Kieran Teasdale, the draft minutes for this can now be seen on our website here – http://diamondblackfan.org.uk/what-we-do/dba-uk-committee/
We also said goodbye to some previous committee members who have stood down –
- Joe Fletcher, Alison Micklethwaite and Jennifer Hamshere
Thank you for all your hard work during your time on the committee! As per the self-nominations that were received before the Family Weekend, we then welcomed onto the committee some new faces, which will be updated on the committee page shortly –
- Helen Till, Stacey Skepper, James Dent and Paul Hubbard
We hope everyone had a great weekend, learned a lot and made some new friends! If you couldn’t join us this year we hope you will have the opportunity to do so next year, bookings will open early in 2016.
The next Family Weekend already has a confirmed date for the weekend of the 20th, 21st and 22nd of May 2016, so pop it in your diaries and we hope to see you there!
If you have any questions about the Family Weekend, or the charity in general please feel free to contact me directly at – firstname.lastname@example.org
Secretary of DBA UK