Marianna & Ewa Marianna and Ewa, sisters from Poland, both talk about their testing process, their feelings on both testing negative and the pressure they felt from family to test. Find out more...
Wayne Wayne, from England, very honestly discusses the testing process and his experience of testing positive. Find out more...
Ask a questionHave a question about HD? Get it answered here by HD experts from around the worldFind out more...
Rhona Macleod Genetic counsellor, Rhona Macleod, talks about the predictive testing process for HD and what to expect from the testing process. Find out more...

Educational videosEveryoneover 1 year ago311311 people shared this0 commentsWelcome to the video section! Here you will find interviews, speeches and educational videos about Huntington’s disease. Many of the speeches and interviews are with young people impacted by Huntington’s disease. These young people have been brave enough to share their stories with us all. You may experience a mix of emotions while watching these videos so please be aware of this when viewing. However, HDYO hopes you will ultimately gain a lot from watching these videos. But if something does upset you, please contact HDYO using the support button.Find out more...

Interviews

Emma's interviewEveryoneover 1 year ago156156 people shared this0 comments In her interview Emma talks about growing up after the loss of her mother, having to look after her brother and the risk of Huntington's disease. Thank you to Emma and the HDA in England & Wales for working with HDYO to provide this interview.Find out more...

Maria's interviewEveryoneover 1 year ago148148 people shared this0 comments Maria talks about her father having Huntington's disease, her family, and her experience of the testing process. Thank you to Maria and the HDA in England & Wales for working with HDYO to provide this interview.Find out more...

Lucas's interviewEveryoneover 1 year ago160160 people shared this0 comments Lucas discuss growing up living with his mother who has Huntington's disease. He talks about the behavioural symptoms experienced by his mum and how this impacted on his own life. Thank you to Lucas and the HDA in England & Wales for working with HDYO to provide this interview.Find out more...

Matt's interviewEveryoneover 1 year ago152152 people shared this0 comments Matt also comes from a background of Huntington's disease and he shared his story in an interview for Rare Disease Day 2011.Find out more...

Luke's storyEveryone7 months ago8686 people shared this0 comments Luke's mum has Huntington's disease and he has a 50% chance of inheriting it from her. Will he take the test when he reaches 18 to find out if he has the faulty gene? Luke's Story shows what it's like for him to be grappling with such complex decisions and what impact his mum's condition has on his life.Find out more...

Jenny's Huntington's StoryEveryoneover 1 year ago160160 people shared this0 comments Jenny bravely discusses her experience of living in a family with Huntington's disease. HDYO thanks Jenny for not only letting us show this video, but for being brave enough to produce this video in the first place.Find out more...

Rhona MacleodEveryone6 months ago8989 people shared this0 comments Genetic counsellor, Rhona Macleod, talks about the predictive testing process for HD and what to expect from the testing process. Find out more...

Marianna & EwaEveryone6 months ago9393 people shared this0 comments Marianna and Ewa, sisters from Poland, both talk about their testing process, their feelings on both testing negative and the pressure they felt from family to test. Find out more...

MichelleEveryone6 months ago9191 people shared this0 comments Michelle from Canada talks about her testing process, testing positive and the impact that has had on her life.Find out more...

TonyEveryone6 months ago9595 people shared this0 comments Tony, from Australia, talks about telling his partner about testing positive and their long but successful journey to have children free of HD using PGD. Find out more...

MartheEveryone6 months ago8787 people shared this0 comments Marthe, from Norway, bravely shares her experiences of being a young carer and overcoming emotional wellbeing issues.Find out more...

WayneEveryone6 months ago106106 people shared this0 comments Wayne, from England, very honestly discusses the testing process and his experience of testing positive. Find out more...

MarinaEveryone6 months ago9595 people shared this0 comments Marina, from Sweden, bravely talks about testing negative and the loss of her mother to HD. Find out more...

Speeches

JeffEveryoneover 1 year ago158158 people shared this0 comments Jeff is now a researcher, looking for effective treatments for Huntington's disease. But he also has a family link to the disease. Check out his speech, given in 2009 at the World Congress for Huntington's disease, to learn more. Thanks to CMMT for allowing us to use Jeff's video.Find out more...

SherryEveryoneover 1 year ago156156 people shared this0 comments Sherry has grown up in a family affected by Huntington's disease and she bravely gave a talk in 2010 to medical students at CIRM. Big thank you to CIRM for letting us use this video.Find out more...

BJEveryoneover 1 year ago159159 people shared this0 comments BJ is a young American man who has grown up in a family with this disease. He is well-known for his excellent fundraising event, the Minnesota Hoopathon, which has been running for around 15 years and has raised an awful lot of money for the Huntington's disease community. Thanks to CMMT for allowing us to use BJ's video.Find out more...

KatieEveryoneover 1 year ago162162 people shared this0 comments Katie is a teenage girl from Canada, who very bravely shared her story in front of over 700 people at the World Congress in 2009. And didn't she do a great job! Thanks to CMMT for allowing us to use Katie's video.Find out more...

Educational Videos

Nancy Wexler revisits VenezuelaEveryoneover 1 year ago253253 people shared this0 comments Nancy Wexler, who was instrumental in finding the gene that causes Huntington's disease, revisits the villages in Venezuela where the gene was discovered. Thanks to the BBC for making the documentary and CHDI for releasing it to HDYO.Find out more...

The OctopusEveryoneover 1 year ago298298 people shared this0 comments The Octopus is a feature-length film by Laetitia, a young woman from France, who shares her experience of living in a family with Huntington's disease and also takes us through her testing process. This video is around 90 minutes long, so you may need to make time to watch it. However it is compelling viewing! Thanks to Laetitia for making this incredible video and to CHDI for releasing it to HDYO.Find out more...

Mandy's testing experienceEveryoneover 1 year ago176176 people shared this0 comments Watch Mandy go through many emotions during her testing experience. Some may find this video distressing. Thanks to Mandy and Donovan Greene for this emotional video.Find out more...

Out in the OpenEveryoneover 1 year ago278278 people shared this0 comments Listen to young people and parents from Scotland discuss their experiences and thoughts on talking to children about Huntington's disease. HDYO would like to thank the Scottish Huntington's Association for making and sharing this video.Find out more...

Research

CHDI Conference 2012Everyone11 months ago121121 people shared this0 comments Charles Sabine reports from the CHDI Conference, in Palm Springs, and highlights all the fantastic progress being made in HD research.Find out more...

What's new in HD researchEveryone7 months ago9898 people shared this0 comments In a lecture to the European Huntington's Association in Stockholm, September 2012, Dr Ed Wild (a Huntington's disease researcher at UCL Institute of Neurology, London and co-founder of HDBuzz.net) presents a round-up of the most promising and exciting research into Huntington's disease (HD). Includes discussion of the basics of how HD damages cells, why researchers are optimistic that effective treatments will be developed and details of many possible approaches. Topics covered include gene silencing (huntingtin lowering), post-translational modification (sirtuin-1 inhibition),...Find out more...

Talking about HD

Talking about HD as a familyEveryone8 months ago109109 people shared this0 comments HDYO interviewed 5 families impacted by HD to hear the thoughts and experiences of adults and young people regarding talking about HD as a family. We would like to thank all 5 families for taking part and being so open and honest.Find out more...

Felicity & DavidEveryone8 months ago101101 people shared this0 comments As part of HDYO's 'Talking about HD as a family' project, we interviewed Felicty and David who shared their experiences of talking about HD in their family. Thank you to Felicity and David for taking part.Find out more...

Forrester familyEveryone8 months ago104104 people shared this0 comments As part of HDYO's 'Talking about HD as a family' project, we interviewed the Forrester family, who shared their experiences of talking about HD in their family. Thank you to Charlotte, David and Carol for taking part.Find out more...

Lewis familyEveryone8 months ago9999 people shared this0 comments As part of HDYO's 'Talking about HD as a family' project, we interviewed the Lewis family, who shared their experiences of talking about HD in their family. Thank you to Liam, Sian, Leslie and Gil for taking part.Find out more...

Sowerby familyEveryone8 months ago101101 people shared this0 comments As part of HDYO's 'Talking about HD as a family' project, we interviewed the Sowerby family, who shared their experiences of talking about HD in their family. Thank you to Brad, Peter and Pam for taking part.Find out more...

Walters familyEveryone8 months ago102102 people shared this0 comments As part of HDYO's 'Talking about HD as a family' project, we interviewed the Walters family, who shared their experiences of talking about HD in their family. Thank you to Ellie, Flo, Meg and Ben for taking part.Find out more...

HDYO

HDYO TrailerEveryone6 months ago8484 people shared this0 comments Young people and professionals tell us what they like most about HDYO!Find out more...

Marcy McDonaldEveryone6 months ago9292 people shared this0 comments Marcy McDonald sends a message to professionals working with family members and young people. Find out more...

Matt Ellison on HDYOEveryone6 months ago9191 people shared this0 comments HDYO’s founder, Matt Ellison, speaks to several hundred professionals about HDYO and the need to support young people.Find out more...