<span class="translation_missing" title="translation missing: en.hdyo.land.loading">Loading</span>
Home Language What is HD? New to HD? Find Resources Research Ask for Help About HDYO News Videos Store Join Mailing List Kids Teens Young Adults Parents and Family JoHD Friends Professionals DONATE! Privacy Contact Us

UK HD Documentary project needing participants

May 31, 2012

Huntington's Disease Youth Organization

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


25 May 2012

HDYO has received information regarding research for an exciting new documentary project being worked on in the UK by Jo Bartlett and her production company! They are looking for people to get in touch who may feel they can provide experience for the research on the project. Please find information on the project below in a message from Jo:


I'm a Producer/Director working with the television production company called What Larks!. I'm currently researching a possible documentary about Huntington's.

I would like to look at the implications of genetic testing for conditions like Huntington's on families, particularly when they have only recently received a diagnosis. My plan is to follow the experiences of a young person whose parent has been diagnosed, as they try to come to terms with the implications for their parent, alongside trying to decide whether they themselves want to be tested for the gene or not.

This is obviously an incredibly sensitive subject area, which needs to be treated with care. I would like to make a film that shows honestly what this situation is like from the perspective of the son or daughter, but that also shows the parallel experiences and feelings of the parent, as the whole family adapts to living with the illness and it's implications. As time goes on and they experience more of the illness I anticipate the young person's views (and their parents') on whether to get tested will go back and forth.

To give you a bit of background information about me, I have always specialised in documentaries with sensitive subject matter, and in the past I've worked on a Channel 4 documentary about an Eton music scholar living with Cystic Fibrosis, a series about living with late-onset eating disorders for BBC1, several films on recognising early signs of cancer for CRUK, and another on living with terminal cancer for Breast Cancer Care, to name a few. I think it's important that anyone involved is always shown as a real person rather than just a 'sufferer of' or 'victim of', so I'm keen to show people's personalities, with moments of humour to balance the difficulties of living with a situation like this.

We're still at early stages, but Channel 4 have shown interest in the documentary, and I now need to speak to people in this situation, to be able to give real-life examples of how they're feeling and the different issues that they're facing. I was hoping you would be able to put me in touch with some young people, in their late teens or early twenties, whose parents have recently been diagnosed and who wouldn't mind having a chat to help with my research. I'm aware that people's circumstances will be changing quickly, so I wouldn't be seeking people's permission to take part in the final film at this stage.

I hope you can help. If you are interested in finding out more about the planned film, just let me know, as I'd be pleased to go over things in a bit more detail. I look forward to hearing from you.

Anybody interesting in participating who fits the criteria can contact Jo via her contact details below!

Jo Bartlett
Main: 0203 327 2880
Mobile: 07887 657 494
Email: jo.bartlett@whatlarks.tv

This seems like a wonderful project and opportunity. HDYO would like to wish Jo all the best with the documentary. If any young people would like to speak with HDYO about this project, rather than contacting Jo directly, then we are happy to hear from you and support you in contacting Jo. Contact HDYO at matt@hdyo.org

Matt, News Update Reporter, HDYO

Our content is split into different groups. Choose the group that best describes your needs for more information on HD.

Kids Teens Young Adults Parents and Family JoHD Friends Professionals