DBA UK Family Weekend Summary 2019!

DBA UK Family Weekend 2019!

A huge thank you to everyone who joined us at PGL Caythorpe for the 19th DBA UK Family Weekend for presentations from medical professionals, activities for the children and lots of conversations between families and patients affected by DBA.

Below are the slides of the presentations that were given during the weekend, please note these are given ‘as is’, without the context and explanation of the speech at the time by the attending experts. They should not be used in place of direct consultation with your medical professionals and are for general information only.

All files are accessible via this Dropbox Sharing Link (we have a couple of files to still add in, but will inform you again when they are all active.)

01 – DBA UK Family Weekend 2019 Agenda

Saturday –
02 – Coping strategies and expectations – Becky Armstrong
03 – Introduction to DBA – Josu De La Fuente (AWAITING FILE)
04 – Compliance – Yvonne Harrington
05 – Nutrition and DBA – Katie Elwig
06 – Genetic and Clinical Diversity in DBA – Deena Iskander (AWAITING FILE)
07 – Education, Health and Care Plans – Resina Chowdhury
08 – Fundraising Success Story – Vicky Fintoft

Sunday –
09 – Update from Euro DBA – Alyson MacInnes
10 – Characterization of DBA via Induced Pluripotent Stem Cells – Devon Germain
11 – Adult Services and DBA Research Updates – Beth Payne
12 – DBA UK Charity Finances – Peter Redmond
13 – Chair’s Report – Leisa Batkin
14 – DBA UK Annual General Meeting – Kieran Teasdale (AWAITING FILE)

If you’re a DBA patient or parent reading this and aren’t already in our private facebook group, you can find it by clicking this link. It’s an opportunity all year round to ask questions of other DBA patients and parents, offer support to others and generally be a place for those with DBA to communicate, outside of the annual Family Weekend.

Below we have some pictures from the weekend, if you have any others you’d like to share, you can put them on our public Facebook page by clicking here! We will use the public page to continue to share news from the world of DBA and our fundraising success stories, so do be sure to give us a ‘Like’ to keep informed.

We will also publish feedback from the Family Weekend once it has all been collated. It will be added to this post.

If you attended the Family Weekend this year, we hope you found it informative and supportive and that we see you again, if you didn’t come this year, we hope we see you next year!

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