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Feedback Team

April 1, 2012

Huntington's Disease Youth Organization

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


Feedback Team

HDYO’s main aim is to support young people affected by Huntington’s disease around the world. In order to provide this support, HDYO produces a huge amount of informative and educational content for young people and their families affected by Huntington’s disease.

HDYO strives to provide appealing, factually correct, educational material for young people impacted by Huntington’s disease. To ensure that young people are receiving the highest quality of information about Huntington’s disease possible, HDYO has a Feedback Team consisting of very capable and knowledgeable professionals and family members from the Huntington’s disease community. The role of the Feedback Team is to provide their thoughts and opinions on all content produced by HDYO before that content is made widely available.

We are very lucky at HDYO that we have a wide range of professionals and family members to call upon, who all provide a different view to take into account. By listening to all of our Feedback Team’s thoughts, we are able to create factually correct, age appropriate information for young people impacted by Huntington’s disease in the world. All members of the Feedback Team give up their time freely - purely because they consider their role and HDYO’s mission as vital. You can meet some of the Feedback Team below and hear their thoughts on being involved with HDYO, as well as see the full list of members for the Feedback Team.

Meet HDYO’s Feedback Team

Cath Stanley

“HDYO is a great initiative and essential resource created by young people for young people. It will form an invaluable resource and support for young people who can empower themselves with knowledge, which will in turn help them cope with the issues relating to Huntington’s disease. I am impressed with the standard of information provided on this website and am happy to be a member of the feedback committee to help enable it to be accurate, balanced and impartial.” Cath Stanley, HDA Chief Executive

Lauren Holder

“HDYO is such an amazing organization and website, not only for children and young adults, but for parents and professionals. I’m honored to help provide feedback and help with making sure that our youth have a place to go for accurate information on HD and great support!” Lauren Holder, Family member

Jimmy Pollard

“When I first came to the worldwide community of those touched by Huntington’s Disease, everyone whom I asked for help, assistance, resources, connections and information shared willingly and immediately. It’s a most rewarding part of our community’s culture. What goes around comes around. When asked to help out here a bit, I said yes, too. Immediately.” Jimmy Pollard, author of ‘Hurry up and wait’

Jamie Levey

“HDYO provides a much-needed resource for information, sharing and support for young people by young people. Young people now have a place where they can freely, (and anonymously, if they so choose), ask questions, join discussions, seek guidance, and become more informed about the challenging issues faced by HD families. I’m impressed by these young dynamic activists who are open to sharing their experiences about tackling HD issues and partake in the online forum that reaches around the globe.” Jamie Levey, EHDN

Entire Feedback Team

  • Jeff Carroll - Researcher & HDBuzz
  • Ed Wild - Researcher & HDBuzz
  • Karen Keenan - Researcher & former HD youth advisor
  • Cath Stanley - Huntington’s Disease Association
  • Alison Heavey - Huntington’s Disease Association
  • Ruth Sands - Huntington’s Disease Association
  • David Drain - Scottish HD youth advisor
  • Kirsten Walker - Scottish HD youth advisor
  • Marcy McDonald - Researcher
  • Nancy Wexler - Researcher & family member
  • Jamie Levey - Euro-HD Network
  • Fred Taubman - Huntington’s Disease Society of America
  • Devin Bonner - Huntington Society of Canada
  • Joe Giuliano - CHDI
  • Jimmy Pollard - Author
  • Lauren Holder - Family member
  • Dave Hodgson - Family member
  • Dirk Bakker - Family member

Aside from the Feedback Team - who provide feedback on all content - HDYO does seek feedback from specific individuals on certain projects in order to get both expert advice and personal experiences. To all of you that provide feedback to HDYO - we thank you from the bottom of our hearts for your time.