DEBRA NZ Family Camp 2019 Highlights

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The DEBRA NZ Family Camp was a great weekend of connecting with other DEBRA members, spending time with friends new and old, and being a part of the unique and caring family of people whose lives are affected by EB.

After a relaxing time meeting and catching up on Friday night, Saturday morning was for go-karting, ice skating and some fun competing at mini golf. On Saturday afternoon while the children were being entertained and the teens were having fun, there were a few presentations including a talk by Paediatric Dentist Erin from Hutt Hospital talking about teeth and EB. Erin is happy to be contacted with any questions: Erin.Mahoney@huttvalleydhb.org.nz. The DEBRA Nurses talked about woundcare and introduced a few new products; and a presentation on some exciting research about to begin in Auckland, growing skin from people with EB and experimenting with genetically modifying it to delete EB.

Saturday night we had a delicious dinner together and time for more conversations, then on Sunday those who didn’t have to leave early visited Staglands Wildlife Park where the children enjoyed exploring and feeding the tame birds and animals. As families left to head to the airport or drive home they were looking forward to meeting up again at the next Family Camp.

In the words of Patricia Buchan, “ I would just like to say a great big thank you for yet another great weekend. It certainly felt like a lovely family reunion and was so nice to be able to reach out and love the two new families. Although it is so sad that they have to deal with coping with the EB, I’m sure it brought great comfort to them to be part of a group that truly understands. I can remember what it meant to me 39 years ago. “

Thanks to EB parent Amy Cook for all her help organising this camp.

"It's a game-changer" - on Seven Sharp

Ahead of his trip to TwitchCon in the United States as a panelist talking about supportive gaming communities, No Hands No Excuses blogger Humphrey Hanley discusses gaming with EB on Seven Sharp.

Read here.

To follow Humphrey on video streaming site Twitch, follow his NoHandsNZ channel.

“And then the Internet came along, where suddenly I could be myself without people being able to judge me based on the fact I had a medical problem.”

“And then the Internet came along, where suddenly I could be myself without people being able to judge me based on the fact I had a medical problem.”

DEBRA International Newsletter

We are counting down to the 2018 DEBRA International Congress with less than 2 months to go. Watch the recording of DEBRA of America’s meeting with the FDA. 2 brand new CPGs are now in development. We need 2 volunteers to help review the Oral Health Care CPG – could this be you? The deadline to apply for the €50,000 Care-for-Rare Science Award closes 31 July. Find out about a new clinical trial called WINGS from ProQR. The 24th IADH Congress will take place in Dubai in August and September with a focus on EB. Apply now for the EURORDIS Winter School!

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