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Huntington's Disease Youth Organization

Can You Help with Research for UK HD Documentary?

HDYO has more information about HD available for young people, parents and professionals on our site:

2 July 2012


You may remember me from a post back in May - I’m a television director researching a possible documentary about Huntington’s. I’d like to make a television programme about young people who have a parent diagnosed with Huntington’s, and who are trying to decide whether to have genetic testing themselves.

We’ve recently had some good news - Channel 4 have given us funding for our research. This is a strong commitment, and means it is now likely the film will be shown on Channel 4. It is also now being considered for an hour slot, so there is real potential here to make a film that makes a big impact.

It’s now even more important for me to speak to as many people as possible who are in this situation. Has your parent recently been diagnosed with HD? Are you trying to decide whether to have genetic testing or not? If so, would you be happy to share your experiences with me over the phone? All information given is strictly confidential, and please be assured that talking to me does not mean that you commit to being filmed. However, it would be really helpful to speak to people in this position, to find out how they really feel, and what they have experienced.

Maybe your parent has coped well with the news but you have found it difficult? Perhaps you are finding it hard to stay strong for your parent? Maybe you are under pressure to be tested but are not sure you want to?

If you are able to help, or would just like to know more, please email me at

Best wishes,

Jo Bartlett

What Larks Productions Ltd