Talking as a family about HD

We are pleased to announce that one of HDYO’s talking as a family about HD project is now available to view and use as a resource. We interviewed 5 families (parents and children) focusing on how they discuss HD as a family and whether being open has been beneficial for them. This is a wonderful opportunity to hear personal experiences on a difficult topic not just from parents, but from children and young people too. The videos are all available from HDYO’s youtube channel where they can easily be shared with families and amongst staff & volunteers. The videos can also be embedded onto your own websites should you wish as well. The project produced 6 videos in total, 5 being individual family interviews and then the other combining all 5 interviews into 1 short video. Here are the links for all 6 videos:

Main video:
Interview 1 – David and Felicity:
Interview 2 – Forrester Family:
Interview 3 – Lewis Family:
Interview 4 – Sowerby Family:
Interview 5 – Walters Family:

We hope these videos are of use in your region for families and professionals. These videos may be just the encouragement needed by those families struggling to make that brave step of talking openly about HD within the family… as these videos show, it can be a beneficial approach for all.

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