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Educational videosKTYPJP49124912 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

Video emmaEmma's interviewKTYPJP716716 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...
Video mariaMaria's interviewKTYPJP645645 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...
Video lucasLucas's interviewKTYPJP686686 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...
Video mattMatt's interviewKTYPJP19271927 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...
Video lukeLuke's storyKTYPJP523523 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...
Video jennyJenny's Huntington's StoryKTYPJP590590 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...
Video stockholm rhonaRhona Macleod - Genetic CounsellingKTYPJP550550 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...
Video stockholm marianna ewaMarianna & Ewa - TestingKTYPJP553553 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...
Video stockholm michelleMichelle - TestingKTYPJP208208 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...
Video stockholm tonyTony - Having childrenKTYPJP579579 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...
Video stockholm martheMarthe - Emotional wellbeingKTYPJP514514 people shared this0 comments Marthe, from Norway, bravely shares her experiences of being a young carer and overcoming emotional wellbeing issues.Find out more...
Video stockholm wayneWayne - TestingKTYPJP589589 people shared this0 comments Wayne, from England, very honestly discusses the testing process and his experience of testing positive. Find out more...
Video stockholm marinaMarina - BereavementKTYPJP620620 people shared this0 comments Marina, from Sweden, bravely talks about testing negative and the loss of her mother to HD. Find out more...
Video matt reasonsMatt's experience of predictive testing for HDKTYPJP223223 people shared this0 comments HDYO founder, Matt Ellison, sums up his reasons for getting tested and his experience of the testing process for Huntington's disease. This video was filmed as part of a training program for genetic counsellors in the UK.Find out more...

Speeches

Video jeffJeffKTYPJP962962 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...
Video sherrySherryKTYPJP928928 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...
Video bjBJKTYPJP22432243 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...
Video katieKatieKTYPJP10391039 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

Video nancyNancy Wexler revisits VenezuelaKTYPJP17331733 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...
Video octopusThe OctopusKTYPJP13101310 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...
Video mandyMandy's testing experienceKTYPJP637637 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...
Video outOut in the OpenKTYPJP25402540 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...
Video hdyo rightsDo You Know Your Rights?KTYPJP203203 people shared this0 comments Do you know your rights as a young person impacted by HD? Every young person is protected by a set of special rights created by the United Nations called the Convention on the Rights of the Child (UNCRC). This video takes a look at those rights from the perspective of a young person impacted by HD to see how those rights relate to situations connected to HD. Watch the video and see how well you know your rights!Find out more...
Video hdyo impactThe Impact of Huntington's Disease on Young PeopleKTYPJP219219 people shared this0 comments The intention of this video is to give a powerful insight into what it is like to be a young person in a family with Huntington's disease and to clearly demonstrate the need for support services to help young people around the world cope with the impact of HD and flourish in life. The 21 young people who participated in this video shared their own personal experiences of being impacted by HD and how having the condition in the family has affected many areas of their own lives. In doing so they provide an accurate and moving account of what it is like to be a young person impacted by HD.If...Find out more...
Video what is hdWhat is Huntington's Disease?KTYPJP18741874 people shared this0 comments With the help of a group of young people, HDYO explains what Huntington's disease (HD) is in a simple, creative and fun way. This video was made especially to help educate young people about HD. Hope you enjoy!Find out more...
Video couplesYoung CouplesEveryone101101 people shared this0 comments Here you will see 4 young couples impacted by HD in some way, talking about how they first discussed HD and how they cope with HD in their lives.Find out more...
Video jhd diagnoseChallenges when diagnosing JHDEveryone4848 people shared this0 comments Dr Martha Nance explores the difficulties in diagnosing JHD as part of her interview with HDYO.Find out more...
Video living with jhdLiving with Juvenile Huntington's DiseaseEveryone4242 people shared this0 comments Four families bravely share their experiences of living with Juvenile Huntington's disease. We advise viewers to be aware that this topic may be upsetting, if you need support email us at support@hdyo.orgFind out more...

Research

Video lund 1HDYO's Tour of the HD Lab - Lund, SwedenKTYPJP232232 people shared this0 comments Ever wondered what it is like inside a lab that does research on Huntington's disease? HDYO, armed with a camera man and some fabulous young presenters, went to Lund, Sweden, to find out exactly what goes on in the lab and how HD research is progressing.Find out more...
Video lund 2HDYO's Tour of the HD Lab - Lund, Sweden (Extended Version)KTYPJP256256 people shared this0 comments Even more footage from HDYO's trip in to a Huntington's disease lab in Lund, Sweden. This extended version provides more insight, interviews and bloopers than the main video! Find out more...
Video chdi2012CHDI Conference Research UpdateKTYPJP624624 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...
Video edtalkHD Research Update 2016KTYPJP270270 people shared this0 comments Ed Wild presents the latest HD research update at the European HD Youth Camp in England to an audience of young people impacted by HD from across Europe. Find out more...

HDYO

Video euro campEuro HD Youth Camp 2016Everyone110110 people shared this0 comments Highlights from the Euro camp 2016 which took place in England, with over 40 young people from several EU countries in attendance for a fun and emotional week!Find out more...
Video na campNorth America HD Youth Camp 2016Everyone6868 people shared this0 comments Highlights reel from HDYO's North American HD Youth Camp 2016 in which 55 young people impacted by Huntington's disease attended the event for free. At camp they participate in fun camp activities, educational and support sessions about HD, and get to meet many other young people impacted by HDFind out more...
Video hdyo trailerHDYO TrailerKTYPJP569569 people shared this0 comments Young people and professionals tell us what they like most about HDYO!Find out more...
Video hdyo marcyMarcy McDonaldKTYPJP535535 people shared this0 comments Marcy McDonald sends a message to professionals working with family members and young people. Find out more...
Video hdyo mattMatt Ellison on HDYOKTYPJP545545 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...
Video hdyo workerUS Youth Worker ProgramKTYPJP214214 people shared this0 comments This video introduces the first ever US Youth Worker Program. The video describes the services available for young people and families in the Mid-Atlantic Region and around the United States. HDYO would like to thank the families who participated and shared their experiences on working with the youth worker.Find out more...
Video what we doHDYO: What We DoKTYPJP257257 people shared this0 comments Not sure what HDYO actually does?! Don't worry, this group of young people can explain it simply for you.Find out more...
Video camp2013 HD European Youth CampKTYPJP241241 people shared this0 comments In 2013, HDYO, along with with several European HD Associations, held a European-wide youth camp in Burgos, Spain. Over 40 young people attended the week-long camp from 8 different countries! For some education, support and fun! See what the camp was like with this short highlights video. Find out more...
Video hdyo internationalHDYO International Representatives ProjectKTYPJP206206 people shared this0 comments A video focusing HDYO's International Representatives project, in which we have trained some fantastic young people to spread awareness of youth support in their local region and tackle social stigma through positive engagement. This video highlights our Reps training event in Minnesota in April, 2014, and follows one of our young reps to their first HD event as a rep. HDYO Reps are trained to present about HDYO and other youth support options in their region. Anyone interested in having a rep at your local event should contact HDYO at reps@hdyo.orgFind out more...
Video camp naN. American HD Youth Camp 2015KTYPJP153153 people shared this0 comments HDYO organized the first ever HD youth camp in N. America, which took place August, 2015, in Maryland, US. Over 40 young people from across the US and Canada took part in the 4 day event. This video shows some of the highlights of camp and allows campers a chance to share their own experiences of camp! What fun we had! :)Find out more...
Video need someoneNeed Someone - Sian LewisKTYPJP274274 people shared this0 comments 14-Year old Sian Lewis performs a song about HDYO written by Sian herself! With a backdrop of pictures of young people sporting their HDYO gear.Find out more...
Video aus nz 2017Aus and NZ HD Youth Camp 2017Everyone4646 people shared this0 comments Highlights from the 1st ever HDYO Aus and NZ youth camp in 2017!Find out more...

Talking about HD

Video familyTalking about HD as a familyKTYPJP39283928 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...
Video family 1Felicity & DavidKTYPJP548548 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...
Video family 2Forrester familyKTYPJP535535 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...
Video family 3Lewis familyKTYPJP663663 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...
Video family 4Sowerby familyKTYPJP520520 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...
Video family 5Walters familyKTYPJP524524 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...