DBA UK Family Weekend 2016 Summary

Hello to all our DBA UK Families and Friends, we hope that those of you who attended our Family Weekend event at PGL Caythorpe found it useful, informative and a place for new connections.

For anyone who wasn’t able to join us, we will pop everything we can on this summary post!

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The Friday night is just used as a gathering night for everyone, as people are coming from all over the UK (and some from outside!) so all our families checked in to their rooms and had opportunity to walk the grounds on a mini tour with the PGL staff, after that we settled in the PGL Staff bar for the rest of the night, greeting old friends and making new ones as people arrived. The children enjoyed the evening disco whilst parents got chatting away to each other.

After breakfast in the dining hall on the Saturday morning, it was down to the courthouse for a busy day of talks and activities, the children went off with the PGL staff for their activities including High Ropes, Abseiling, Trapeze, Jacob’s Ladder and Archery as well as the younger ones in the two creche facilities.

The creche was split into two different rooms this year and we think it worked much better in terms of keeping them occupied and well looked after, we also had some extra volunteers helping out this year in the form of Lara Pledge, Stacey Skepper and Adrienne Race, the latter two both adult DBA patients themselves!

 

With the children being looked after we went into the morning welcome session where everyone introduced themselves and told the group a bit about their DBA patient and where they are in their DBA journey. This can be an emotionally charged section, but all are made to feel welcome in our DBA UK family. We had 10 new families this year, not all with newborns though, so it was a diverse group and interesting to listen to everyone’s story.

We also showed the official DBA UK charity video, which gives a good overview of the condition and also the charity –

After this, through the rest of Saturday we had some excellent talks from Dr Josu De La Fuente, our primary contact for DBA in the UK; he discussed the Care Pathway which he has created to define the best step by step guide to managing DBA from getting the initial diagnosis through to the main three treatments options of Steroids, Blood Transfusions and Bone Marrow Transplants.

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Left to Right, Josu De La Fuente, Nick Watkins, Deena Iskander and Beth Payne, some of our guest speakers!

We had Deena Iskander who discussed her research into why steroids work in some DBA patients but not others, Sandra Hing from the Genetics Lab in London who work hard on getting our families their Gene Mutation information, also offering her thanks to DBA UK for funding a second Ion Torrent (or ‘Gene Machine’!) which has enabled their work to progress much faster.

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Later we had talks from Alyson MacInnes and EuroDBA who discusses the European patient registries, making better links and also the exciting developments with CRISPR gene editing technologies which may one day lead to a gene therapy cure for DBA.

Alyson MacInnes also showed this video as a great explanation of the CRISPR Technology

Beth Payne was also there to discuss the final stages of her Zebrafish Research, as well as setting up an adult patient clinic for those with DBA, to allow transition from the paediatric wards to a more custom built ‘grown up’ setting.

Fabienne Neufert is an adult DBA patient herself, who visited us from France! She talked about living with DBA from her adult perspective. Noemi Roy asked for our families involvement in preparing a questionnaire which would be used to guide and prioritise future research.

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Left to Right, Alyson MacInnes, Noemi Roy, Beth Payne, Fabienne Neufert and Lydie Da Costa, some more of our fantastic guest speakers!

And finally on the Sunday we had Nick Watkins talking through his research which has been part funded by DBA UK, into the behaviour of p53 and the implications this has for potential alternatives to steroids as a treatment method, to avoid adverse side effects.

In addition to this, Peter Redmond discussed the charity accounts and Martin Winter talked about all the exciting fundraising people have been doing through the year, during the AGM on Sunday.

All in all a very exciting time in the field of DBA research and treatment! You can find each of the speakers’ presentations below, just click to download each one –

After the talks on the Saturday we had a BBQ, although unfortunately this had to be served  inside due to a rather grey and damp evening. The children did manage to get down to the bonfire though for a bit of a sing song!

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We also had a balloon release in support of DBA UK which the children were keen to take part in.

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After this the rest of the night was spent in the courthouse, allowing the families to mingle, discuss what they had heard during the day and also enjoy some wine and cheese from the DBA UK bar.

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Martin Winter also had some fundraising games on the go to keep everyone entertained!

As mentioned above we had a final couple of talks on the Sunday, as well as the charity AGM where Peter Redmond ran through the year’s finances, Martin Winter discussed fundraising activities throughout the year and offered encouragement to everyone for the coming year. Kieran Teasdale also managed the elections section where himself, Hayley Teasdale, Paul Hubbard and Sam Robinson stepped down from the committee. Jennifer Hamshere and Joanne Hubbard  joined the committee for the coming year.

After our final lunch on the Sunday, everyone (adults included) were free to join the Queue and Do sessions for activities, but many had also started to make some long journeys home.

We do hope that everyone enjoyed the Family Weekend and found it useful, it is the key date in the DBA UK calendar and for many, it will be the first time they have met anyone else with DBA, someone to relate to and someone to learn from.

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Following on from this, we already have a number of feedback surveys completed, we think this shows it was a much stronger event this year, but we will always strive to make it better! Please click here to see the feedback (this will update over the next week or so as more feedback comes in).

Once again, thank you to all those that came along to the Family Weekend, it wouldn’t be what it is without you. For those who couldn’t come, we hope to see you next year!

If you have any questions about the Family Weekend, or the charity in general, please send an email to the DBA UK Secretary – secretary@diamondblackfan.org.uk

If you would like to get involved in any fundraising for DBA UK, please send an email to Martin Winter – martin.winter@diamondblackfan.org.uk

Kind regards,
Kieran Teasdale
Outgoing Secretary of DBA UK

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