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HDYO Mid Year Report 2021Everyone/downloads/hdyo-2021-mid-year-report.pdfFind out more...
HDYO Christmas cards now on sale/eve/storeFind out more...
HDYO welcomes Jenna as our North American project coordinatorEveryoneJenna Shea, Toronto, Ontario, Canada Jenna, a teacher in the GTA, is a mother to two little girls and a member of a family deeply affected by Huntington’s Disease. Over the last several years, Jenna has taken on a fairly active role as a patient advocate for those affected by HD. She is currently a mentor for the Youth Mentorship Program through the Huntington Society of Canada (HSC) and has supported HSC’s efforts to raise awareness by sharing her story of HD at conferences and other educational forums within the Canadian community and internationally. In 2018, Jenna became a member of...Find out more...
Fallen EaglesEveryone

A carefully crafted selection of short stories which cover upbringing, relationships, sexuality and other rites of passage.

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Surviving the holidays and change in seasonEveryone

Here's Abi Kane one of our young people with some top tips for you.

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Happy Thanksgiving From All At HDYO!Everyone

Surviving the holidays and change in season

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Positive Coping Strategies for Stressful TimesEveryone

In years past, the holiday season and less sunlight for most of the world’s population increases the likelihood of mental health symptoms popping in to say “hello” and maybe even “I am in charge of you now”.

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HDYO International Young Adult Virtual CongressEveryone

Unfortunately, we’ve had to take the difficult decision to cancel the HDYO's 1st Intl Young Adult Congress in Glasgow, March 2021, with the Coronavirus pandemic still causing issues globally.

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HDYO Holiday CardsEveryone

We have a selection of holiday cards available to buy now in our store.

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Staying Connected ProgramTYWe are proud to offer the staying connected program which provides monthly opportunities for young people to connect with each other on various HD topics or just a general chat. The links to these activities change each month so please follow us on social media, emails or contact us to see what’s coming up in the next weeks you may want to participate in! Find out more...
Angela's storyEveryone Hi everyone, I’m Angela. I’ve created this video as part of Huntington’s disease awareness month. Huntington’s disease is a brain disorder caused by a defective gene in the DNA instructions called huntingtin which causes nerve cells in the brain to break down over time and deteriorates a person’s physical, mental, and emotional abilities. All children born from a parent with HD has a fixed 50% chance of it being inherited. Most people begin developing symptoms between the ages of 30 to 50, but it can also occur for children, known as Juvenile Huntingtons Disease. Huntington’s disease is...Find out more...
Tatiana's StoryEveryoneClick the language selector in top right to read this story in Portuguese. Tatiana Henrique 27 years old Psychologist Family member at risk for HDBrazil, May 2021At age five, I had no idea why uncle Chico behaved that way. I remember visiting your home in the interior of Alagoas (state of Brazil) and some images fill my memory. I remember that in his house there was a bay-like door, and immediately saw a wall full of pictures of saints. Leaning against this wall full of images, he was the most attention-grabbing figure. Sitting in the wheelchair and too thin, his fingers and legs were...Find out more...
Anonymous storyEveryoneMy husband and I met at a young age, we were still at school. His Dad was symptomatic with Huntington’s Disease. I didn’t know much about it, but his speech was odd, his face looked different and his walking was unsteady. It was uncomfortable to see him, because I didn’t really know how to be around him. As my (now) husband and I grew closer, I learned that HD is genetically inherited and that this teenager I was falling for was at risk. It didn’t really bother me, so the relationship developed, We married and had children.I was so conscious about the HD risk to our children and prior to...Find out more...
Emma's storyEveryoneMy journey with Huntington’s Disease began at a very young age (albeit there was no actual diagnosis at this time). My Grandad was known in the family as ‘the one who jigged & couldn’t sit still’ we had no idea he was suffering from HD, the doctors originally thought he had late-onset Parkinson’s but he was diagnosed with HD in 2010 & later passed in 2012. At this stage I was only in my late teens and didn’t really understand the seriousness of the condition, it was then in 2014 that my Dad’s colleagues had noticed his behaviour change at work, and they asked him to be tested for HD.....Find out more...
Erin's storyEveryoneMy husband and I were just getting home from a run with our friends. As we were walking through the front door my phone started ringing. I kicked off my shoes in a hurry and they landed haphazardly on the floor. My gym bag was still hanging from my shoulder as I answered the phone. "Hi Mom" I said unaware that the course of my life was about to change. Most evenings my husband and I wouldn't get home until after 9pm. We were heavily involved in sports, playing on two baseball teams, a volleyball team, working out at the gym and training for half marathons. All of this after a long day at...Find out more...
Anne's storyEveryoneHello! My name is Anne. I am 24 years old and currently shifting between living in Colombia and Sweden. When I was born, my uncle had Huntington's disease, and later on, my dad as well. My dad passed away during the beginning of the pandemic in 2020, and I miss him a lot. I am now the only person at risk in my family and somehow related to Huntington's disease, and what I have always been doing is to learn more about the disease from different perspectives and telling my story from a more positive perspective. Hej! Mitt namn är Anne. Jag är 24 år gammal och skiftar med att bo i Colombia och...Find out more...
Getting through the holidays while grievingEveryoneFirst, let’s talk about grief. Grief is a complicated emotion that can occur after you lose someone, but also with any major life changes. When we talk about HD, there are many instances when grief may occur:When losing a loved one Your own diagnosis or family members Changes in the home (parent unable to do tasks, changes in activities due to illness) Moving a loved one to a care home Changes in traditions due to changes in family The holidays often bring up a lot of complicated feelings or exacerbates feelings we are already having. Know that you are a not alone, change is hard and,...Find out more...
EHDN ConferenceEveryoneNot only did I have the opportunity to attend my first ever EHDN Conference, but I also spoke in two different sessions; Everyday Life as an HD Gene Carrier and Debate Session about Confidentiality in Huntington’s Disease. I didn’t really know what to expect since I heard it happens every two years in Europe and is one of the largest HD gatherings in the world. It was definitely different compared to the HD conferences I have been to in the past, but I definitely learned a lot both as a speaker and an attendee. Here is what I learned:Young people from all over Europe and Asia do not have...Find out more...
Brayan’s Story – PeruEveryoneMy name is Brayan Guzmán, I’m 26 years old and this is my story, I’m from Peru and I came from an HD family, the first person to had HD was my paternal grandmother, which she had 10 children’s; at the moment 3 of them already have HD, of which 2 of them already died, my uncle and my dad. At the beginning as any kid, I ignored what was happening, my dad started to having symptoms when he was around his 50, back then my dad earned his living by been a waiter, from the ignorance of the people we suffer rejection and offensive comments such as “your father is drunk, and he can’t work”....Find out more...
Find Your HD PlatformEveryoneThe main reason that agreed to help Matt start HDYO, was because I lived through everything that young people go through while in a family impacted by HD. I watched my Mom slowly progress which resulted in a somewhat dysfunctional family situation. I endured the struggles telling friends and a community about the difficulties of HD. I experienced the emotional rollercoaster of my sister and I both being at-risk. I’ve had to say goodbye to my Mom and many other HD family friends that we have met along the way. These times weren’t easy, but there were a few happenstance occurrences that I was...Find out more...
Looking ahead to South American training event!EveryoneI’m pretty excited about our next trip, which will be to Colombia from July 3rd-11th. We have put together a training event for almost 30 young people from across South America to attend. The event, on the 5th and 6th, will focus on looking at the support currently available to young people impacted by HD in each country in South America and then we will develop plans as a group to improve support for young people. It is our first major move in South America, I attended a world congress in Brazil some years ago and visited some local families in Feira Grande, Brazil, but this event has the...Find out more...
The Taboo of Mental IllnessEveryoneMental health is always a hard topic to tackle, not just with young people, but with humans in general. So often we are taught that we need to “toughen up” and that we should pretend that nothing is wrong even when we are struggling the most. Historically, we sent people with severe mental disorders away and shunned the rest of mainstream society. Decades of this behavior gave mental health a stigma and almost legitimized the claim that it was something that one could control and just “snap out of.”Although things have changed quite a bit, mental health can be a hard thing to discuss. The...Find out more...
Enroll-HD Congress 2018EveryoneI had the honor to attend ENROLL HD’s Inaugural International meeting earlier this week to represent HDYO and all the young people in families impacted by HD. I was joined by my colleague/friend, Cat Martin, HDYO’s Executive Director. The conference took place Sunday May 20 through Tuesday May 22 in Quebec City Canada. I was astounded to see over 500 leaders in research attend from around the world to come and collaborate!I am a current participant of Enroll HD (4-5 years) and have been involved in almost any other study that will take me over the years; COHORT, PREDICT, Exercise HD and...Find out more...
A family in needEveryoneAs it’s my turn for a blog post I wanted to dedicate this post to a family in need of your support and well wishes at this time. Last week, the Boulavsky family in the US had a very traumatic experience. We know the family as their 3 sisters have all been to our North American camp with the eldest, Erika, having been a volunteer for us at camp for the past two years. Unfortunately, last week their mother, Elaine, and youngest sister, Khrysta, were trapped in their apartment on the 3rd floor by a fire spreading throughout the building. They both bravely jumped from the 3rd floor of the...Find out more...
CHDI Therapeutics Conference UpdateEveryone2018 started with a whirlwind of hope after the December announcement from Ionis that their trial of the Huntingtin Lowering drug Ionis-HTTRx was safe and well tolerated. In Feb 2018 our Chairperson BJ Viau represented HDYO at the CHDI Palm Springs Therapeutics conference where the data from the trial was being presented by Prof Sarah Tabrizi.Here is the video from the conferences with all the information about the latest research and opportunities, including an interview with BJ and a very brief appearance by Cat. The main message is that the whirlwind looks likely to continue but for now...Find out more...
Me & My Youth WorkerEveryoneIf someone had told me three years ago that I would have moved to DC and gotten tested for Huntington’s Disease I would have told them they were out of their mind. Even more so, if they would have told me that I would find a one of a kind social worker who would literally hold my hand through the most stressful experience of my life I would say HA HA YEA RIGHT. Well needless to say that’s exactly what happened. I moved to DC and got tested for Huntington’s and I didn’t do it alone. I had Chandler Swope to help me during it all and I can’t imagine what it would have been like to not have her...Find out more...
6 Years of HDYOEveryoneLast week we passed HDYO’s 6-year milestone. It really has been a wonderful journey for myself personally but more importantly for HDYO. When we started HDYO we really just wanted someone to benefit from our website which we’d put a lot of time and effort into making educational and accessible for young people. Little did we know that the response to HDYO would be hugely positive and we’ve achieved some wonderful goals which weren’t even on our radar when we started. Here are some things we’ve achieved in that time:Around 3 million people have visited HDYO’s website in 6 years Our website...Find out more...
Find Your PurposeEveryoneThe end of 2017 was such a whirlwind for me. I went from sharing my HD story at the Northwestern Symposium in Chicago, to feeling lost and mentally drained, to searching for my purpose in life. Each part has had a significant impact on my life and where I am today, and I have to constantly remind myself to focus on the present and forget about my past.The Northwestern Symposium was an amazing experience because I had the opportunity to share my HD story and the impact HD has had on my life. With the help from one of my roommates (who I continue to hint at writing a book on me), I was able...Find out more...
HD has no bordersEveryone“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at it’s final destination, full of hope.” – Maya AngelouHD doesn’t have many positives, but I have been lucky enough to travel to many places while working with HDYO and I know many young people and individuals who have been afforded the same opportunity. I have met so many amazing people and seen some of the most beautiful places I’ve ever come to know thanks to these opportunities. I’ve also learned so much – I’ve come to know that HD has no borders. The HD community is the strongest, most...Find out more...
Connections and JourneysEveryoneAs we come to the end of the holiday season I have been thinking a lot about the people who I have encountered throughout the last year. This in turn got me thinking about how many people we come into contact with as we journey through our lives.On Wednesday (3 Jan) two of the incredible young people who attended our first Australia/New Zealand youth camp in Queensland last January met with me again here in Scotland with their lovely parents. We had lunch and chatted about everything and nothing. I can’t tell how much it means when families that we have worked with reach out to say hello...Find out more...
Be who you needed when you were youngerEveryoneIn this #SeasonOfSmiles I thought I would tell you a little bit of my story and why I am being who I needed when I was younger. Huntington’s Disease (HD) is a rare neurological disease. So rare in fact, that when I first found out that I was at risk of inheriting HD five years ago, I had only ever heard of it on an episode of Private Practice.My grandmother passed away from Huntington’s Disease in February of 2012. At the time, I was already a mother to my fourteen month old daughter, Sophie. It was devastating to lose my grandma and at the same time learn that I was at risk of inheriting a...Find out more...
Empathy, Vulnerability and AuthenticityEveryoneI was really struggling to figure out what I wanted to write about this time. I had a few ideas, but whenever I went to write I couldn’t get the words to make sense. I then read a quote in an article and it all became clear. The quote was “My Life is Mine.” This quote helped me put some of my thoughts into perspective. For me, this quote has a lot of meaning, but three themes really stood out:There is power in speaking things into existence. This doesn’t make things easy, but it gives someone a sense of ownership and control over things that makes them a force to be reckoned with should...Find out more...
Imagining the Impossible, Achieving because I’m PossibleEveryoneOne of my favourite quotes is from is from Audrey Hepburn:“Nothing is impossible, the word itself says I’m possible”This changed my mindset from one of can’t to can. A simple change that opens up a whole new world of possibilities.In 2007 a colleague and I who worked for Scottish Huntington’s Association spoke at HD World Congress about the importance of supporting and educating young people about HD in an age and stage appropriate way. To say that there was resistance from the whole community is a bit of an understatement, the majority believed it was wrong and impossible. Ten years on the...Find out more...
Challenge Yourself!EveryoneWith HDYO’s Challenge Week starting this Sunday, I had to take the opportunity for my first blog post for, INSIDE THE YO, to discuss the opportunity that everyone has in the HD community to challenge ourselves to do good by helping others. HDYO Challenge Week is meant to challenge anyone to choose something they have been wanting to accomplish for a while and make it happen between October 22-28! Check out HDYO’s Facebook page for more info on Challenge Week.As a reminder, INSIDE THE YO blog, is meant to be a bi-weekly post from HDYO’s working team to give you an inside look at who we are...Find out more...
The serious truth behind young people in HD familiesEveryoneI was watching a video last week of a speech I made back in 2012 at Stockholm Euro HD Network convention. I assure you all that I don’t watch my own talks as a hobby, this one just happened to show up on social media so I watched part of it and it got me thinking. At the time of the speech HDYO had recently launched and this was our first big HD convention in which we were able to get up on stage and talk about HDYO and our goals moving forwards. In order to talk about HDYO I needed to talk about the reason why it was needed – the huge lack of support for young people in HD families. I...Find out more...
A Hope in the UnseenEveryoneI’m a firm believer that there is a power to positive thinking and planning. I think we can all agree that life is hard and a good majority of it is out of our control. The one thing we can control is how we take on challenges as they come. You can focus on the negative side of something, or try to find some glimmer of something positive in a situation. I try to always do the later- even when it seems impossible. Finding something good in the worst of moments helps me continue to seek more positivity and helps me recover from life’s blows just a little bit faster.I know…I know. That is much...Find out more...
Summer Full of HDYOEveryoneHi Everyone! For those of you who do not know me, my name is Seth Rotberg and I currently sit on the Board of Trustees for HDYO. Just like many of you, I also come from an HD family and my mom was the first person in our family to have the disease. I am originally from outside of Boston, MA (Best sports in the country!), but moved to Chicago last August for graduate school. I could talk all day about my personal HD experience, but I am going to switch gears into my busy summer! Can you believe summer is just about over?! This has been one of my busiest and most traveled summers of my...Find out more...
Age is just a number!EveryoneI have very recently turned 39 and with a milestone birthday looming I have spent some time contemplating what I have achieved, what I still want to do and officially growing up. I am lucky to be someone who has always enjoyed their job, even thought I never consciously decided what I wanted to be when I grew up. Instead, I tried different jobs, that when looked at individually don’t really have a connection; Gym Receptionist, Mortgage Advisor, Youth Worker, Project Manager, Outdoor Instructor, Executive Director. Actually, people are the common link. All of these jobs have been about...Find out more...
Welcome to the HDYO BlogEveryoneThe HDYO blog will be written by our staff, volunteers and a few special guests and posted every second Friday. INSIDE THE YO, will help our supporters get to know us a bit more and understand why we do what we do. We are always interested to hear your feedback and what you would like us to talk about.Find out more...
HDYO 2014 Annual ReportKTYPJP Dear Supporter,It is a pleasure to bring to you HDYO’s 2014 Annual Review. We are now approaching HDYO’s 3rd Birthday and, as I reflect on where we are now to where we were 3 years ago, it is truly remarkable to see the development and substantial progress that a largely voluntary non-profit, run by young people, has made on the Huntington’s disease (HD) community. HDYO has continued to grow on many fronts throughout 2014 and is providing essential services for young people globally. HDYO.org page views for the past 12 months have followed the trend of increasing year on year. In December...Find out more...
HDYO 2017 Annual ReportEveryone/hdyo-annual-report-2017.pdfFind out more...
HDYO 2018 Annual ReportEveryone/hdyo-annual-report-2018.pdfFind out more...
HDYO 2013 Annual ReportKTYPJP Dear Supporter,What an incredible year it has been for this little non-profit organization. At the end of my message in last year’s review I said that we had laid down some solid foundations on which to grow this organization into something special. Well this year brought with it some special growth at HDYO, and we feel that we have built upon the foundations of last year and begun creating an extremely effective resource for young people impacted by Huntington’s disease (HD) around the world. This year has seen HDYO recruit not one but two full-time employees: Matt Ellison as project...Find out more...
HDYO 2015 Annual ReportEveryone Dear Supporter,Reflecting on 2015, it has been another very positive year for HDYO. We made some great strides once again this year and we continue to see a great reaction to our work from young people and families globally. From my point of view there have been two significant projects that we have accomplished in 2015, both have been on our agenda for a while and I’m delighted that we’ve achieved both in this past 12 months. First, we’ve seen the development of HDYO Land, a project specifically for children to learn about HD, which has just launched on our site and aims to fill the gap...Find out more...
HDYO 2012 Annual ReportKTYPJP Dear Supporter,The year 2012 has been a hugely significant one for the Huntington’s Disease Youth Organization (HDYO). Having launched on Febraury 7th 2012 this is our first year as an organization, and therefore our first annual review. Setting out to provide a youth-led platform that not only educates and supports young people impacted by Huntington’s disease (HD) around the world, but appeals to them too, is a challenging goal. But it is a goal that I am very proud to say HDYO has made phenomenal progress with.The HDYO website, full of new, colourful, educational content created...Find out more...
HDYO 2016 Annual ReportEveryone Dear Supporter,What a year! There is only one place to start for our review of 2016… youth camps. It is undoubtedly the year of the youth camps. Prior to 2016 we had run two continental sized youth camps in our time as a charity, one in Europe in 2013 and another in North America in 2015. This year we ran both a European Camp and a North American HD Youth Camp back-to-back in August. Both were very successful events as we will highlight in the report. These two camps combined is a fantastic achievement and a lot of work, but we have been fortunate enough to find a way to bring another...Find out more...
HDYO’s International Young Adult Congress PostponedIt is with regret that we at HDYO have to postpone our inaugural Young Adult Congress which was scheduled for 9-11 May 2020. It will now be held in March 2021. This is due to circumstances beyond our control.We have been working to come up with an alternative date which we can announce as 12th-14th March 2021. This is the earliest availability that we could secure. HDYO will work with anyone who has already booked their travel to help them reschedule for the new dates. For scholarship recipients, your award will be automatically carried forward to the new dates. See below for FAQs for...Find out more...
HDYO Intl Young Adult Congress – Registration now openEveryone

Registration is now officially open for HDYO’s Intl Young Adult Congress taking place in Glasgow Scotland, May 9-11 2020.

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Scholarships for HDYO Intl Young Adult CongressEveryone

Scholarships are now officially open to apply for to go to HDYO’sIntl Young Adult Congress taking place in Glasgow Scotland, May 9-11 2020.

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HDYO Inaugural Young Adult Congress in May 2020 announcedEveryone

To celebrate the start of International Huntington’s Disease Awareness month, Huntington’s Disease Youth Organization (HDYO) are delighted to announce that they will hold the world’s 1st International Young Adults Conference for 18-35-year olds impacted by Huntington’s Disease in Glasgow, Scotland from 9th -11th May 2020.

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HDYO Facebook GroupEveryone

We've created a new Facebook Group where you can talk and share in private. Join the group by following this link:

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HDYO Happenings - Fall 2017Everyone

Our quarterly newsletter on support, education and motivation from around the world for young people impacted by HD.

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University of Leicester HD well-being surveyEveryone

Researchers from the University of Leicester, alongside HD clinicians, are trying to find out about psychological well-being among those who have tested positive for HD (whether symptomatic or not), and those at-risk of HD.

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HDYO Happenings - Spring 2017Everyone

Our quarterly newsletter on support, education and motivation from around the world for young people impacted by HD.

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Huntington's Disease Youth Organization hires Executive DirectorEveryone

Huntington’s Disease Youth Organization (HDYO) has appointed Catherine Martin, to take on the role of Executive Director of the international non-profit with a mission of supporting young people impacted by Huntington’s Disease.

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HDYO Celebrates 5 Years!Everyone

Earlier this month, HDYO turned 5 years old. But what have we done in that time? The answer, fortunately, is lots!

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HDYO Recruiting new staff personEveryone

HDYO is recruiting for a new staff role to expand our team.

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HDYO Hot-Seat with FilipaEveryone

We decided to interview Filipa Julio, from Portugal, who is one of our most reliable translators and reviewers in Portuguese, and is herself very involved in the HD community despite no family connection.

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North American HD Youth Camp 2017 Applications Now Open!Everyone

After the great success of the North American camp last year, we are very happy to announce the opening of applications for the camp again this year!

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Selena's North American Camp 2016 JourneyEveryone

After spending four days with so many inspiring young people I have decided to write for an audience that isn't my notebook stored away in my desk drawer. I have shared my experience at the 2016 North American Huntington's Disease Youth Camp with everyone I have had the chance to, but I feel I haven't done the camp justice with my spoken words.

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Leah and Anna's North American Camp 2016 ExperienceEveryone

The Huntington's Disease Youth Organization is a group that has successfully created a safe place for young people to learn and grow together through their connections with HD. The camp allows youth from across the country to come together and create life-long bonds, leaving with the knowledge that they have an endless amount of support and love whenever they need it. The four day experience provides a place where the youth get to live care-free, even when disease has taken over their lives and forced them to mature faster than other people their age. It's a time of peace, empathy, joy, and freedom, as caregivers, the at-risk, and the tested are able to take a break from their heavy burdens. Most importantly, campers are gifted with access to time for self-care and relationship building-a type of therapy that helps them grow and provides the tools that they need in order to return to the harsh reality that lives back home.

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Ashley's Euro Camp ExperienceEveryone

To start I would like to Matt and Cat for all of the organization and effort that was put into pulling off such an amazing week. I'd also like to express my most heartfelt appreciation to Michelle, who is my support worker in Northern Ireland and to Grant, who was my team leader and my temporary support worker. You and all your colleagues do such amazing work and deserve utmost gratitude for all that you do. I'd also like to thank my girls Chloe, Roisin and Amy as I couldn't have asked for more fun-loving and wonderful people to share this experience with!

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A new member of the HD family!Everyone

Anyone who knowingly faces the possibility of Huntington's disease is far too familiar with one hauntingly uncertain fraction: 50/50. There's a 50 percent our lives will flip upside down. There's a 50 percent chance they won't. There's zero assurance and a constant teeter-tottering between levels of hope and doubt.

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Australia and New Zealand HD Youth Camp 2017!Everyone

We are absolutely delighted to announce that in January 2017 we will be hosting a HD Youth Camp for young people in Australia and New Zealand! This event will be completely free for young people to attend. Applications are now open…

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Living at risk of HD - Research study for young peopleEveryone

This is an easy study for young people to get involved in a research study that will help better understand what young people in HD families need in terms of support. To learn more about the study, read below!

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Survey on how young adults affected by or at risk for Huntington’s disease are thinking about future optionsEveryone

This is a notification on a survey young people impacted by HD globally can participate in. It’s focused on young people’s knowledge of the options around having children. For more details click the link to read the whole article.

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HDYO Hot Seat – JuditEveryone

Judit from Spain is the young person in the HDYO Hot Seat this month!

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European HD Youth Camp 2016 Applications OpenEveryone

We are delighted to announce that a European HD Youth Camp will be taking place in England this August!

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North American HD Youth Camp Applications Now Open!Everyone

After the great success of the North American camp last year, we are very happy to announce the opening of applications for the camp again this year!

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HDYO Hot Seat with LucresEveryone

In the Hot Seat this month is HDYO Dutch translation coordinator, Lucres!

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HDYO Land Launches!Everyone

HDYO’s brand new children’s educational project, HDYO Land, launches today! Filling a gap in resources for children to learn about HD in an appropriate way.

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Twitch Documentary availableEveryone

Twitch is a powerful documentary created by Kristen, a young person in a HD family, which explores her experiences of growing up in a family with HD and focuses on her predictive testing process and results.

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BJ reviews new HD book recently launched – Rules for 50/50 chancesEveryone

RULES FOR 50/50 CHANCES is a page turning novel written by Kate McGovern. RULES takes you through a one year journey of Rose Levenson, a seventeen year old living at risk for Huntington’s disease while also caring for her mother and trying to live a normal life with friends, ballet and teenage love.

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Western Australia’s HD Youth ServiceEveryone

We were lucky enough to speak with Monica, who is the Youth Liaison Officer for Huntington’s Western Australia to find out more about the organisation’s youth service for young people who have been impacted by or are at risk of Huntington’s Disease!

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3 Reasons why Enroll-HD is the most powerful longitudinal study everEveryone

Chris explains what makes Enroll-HD is the best HD study ever

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My Experience at the HD Youth Camp!KTYPJP

If I could sum up this North American HD Camp in a few words they would be: inspiring, helpful and life changing. I did not think that I would leave camp with tears of both happiness and sadness. I most definitely did not think that I would form such a close bond with all of the campers and staff. I honestly added family members, not friends to my circle, and that is an amazing feeling in itself.

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HDYO Hot-Seat with JohanKTYPJP

This month we find HDYO volunteer, Johan, in the Hot Seat, taking questions from Erlend, from the HDYO News Team.

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HDYO Hot Seat with MaricaKTYPJP

Join us as we catch up with Marica, one of HDYO’s translators, in the HDYO Hot Seat! Marica practically got HDYO into Italian by herself with some amazing volunteer effort. We’re proud to have her on our team!

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Mikayla’s story – David vs GoliathKTYPJP

Small but mighty—it’s a cliché used far too often in society, and when used, it rarely describes its object of depiction with accuracy. In some circumstances, however, the David-Meets-Goliath motto meets its analogical match. In this circumstance, the match is Mikayla Hounchell, the world’s twenty-first century David. Her Goliath? Huntington’s disease.

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Boston’s busy beeKTYPJP

Let us introduce you to Seth Rotberg! This American guy is one of many young adults around the globe who is coping with HD. The 24-year old lives in Natick, Massachusetts. Natick is around a forty-minute drive away from the state’s capital Boston, where he will move to this September. Seth was formerly the President for the Massachusetts chapter of the Huntington’s Disease Society of America (HDSA) and works for Boston Scholar Athletes, a non-profit organisation.

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Mid-2015 Update from HDYOKTYPJP

Well, we are just over a half way through 2015 now and I suppose the usual comment to make is how quickly the year has gone by so far! Let’s have a look at what we’ve been up to and what’s coming up on our workload as we head towards 2016.

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Lighting It Up for HD #LightItUp4HDKTYPJP

May 4th was a monumental day for the Canadian HD community thanks to Jamie Walters, a volunteer with the Huntington Society of Canada.

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HDYO Hot Seat – AllyKTYPJP

This month in the HDYO Hot Seat we find Ally, a forum moderator at HDYO!

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EHA conference 2015 – Warsaw, PolandKTYPJP

We’re pleased to announce that there will be a family-focused conference in Europe this year, in the form of the EHA conference!

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Destiny’s Enroll-HD visitKTYPJP

A trip to DC was an adventure indeed. My family and I had the opportunity to participate in another study for Huntington’s Disease called ENROLL. The study takes place nationwide and tests those at risks for Huntington’s as well as some care-takers. My family and I are always willing to get involved in any way that we can so this was the perfect opportunity for us all to get involved together.

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HDYO Hot seat with ClaraKTYPJP

Find out what happened when we interviewed HDYO German translator Clara for the HDYO seat!

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Keep the Doctor Away; 5 Clinical Trials Bringing HD Therapies to Us Today KTYPJP

For those of us who aren’t as in touch with the research as we would like to be, the information that this year sees the commencement of 5 clinical trials for HD treatments may come as something of a surprise. Even to regular meeting-goers, the announcements at the latest EHDN conference in Barcelona seemed to signal a significant change of pace; promising therapies were no longer just on the horizon.

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Megan Osowski: A Warrior of Her Own KindKTYPJP

If there is any statement to describe young Megan Osowski, it is that she is simply a warrior. Though she has been dealt cards of an unfortunate deck in life, she has risen to overcome. Growing up, Megan endured the struggles of having a parent with HD, a battle few others her age must face. As a result of her father's illness, Megan earned her strength at a very young age. Her independent personality has allowed her to patch her scars and move forward, even when her heart begs for her to do otherwise. Most would fall learning to walk in Megan's shoes, but the brave young girl never seems falter in her steps. '[I have] a drive inside me that no one else has,' she states.

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Chandler's Mid-Atlantic HD youth service updateKTYPJP

I’ve been with HDYO just over a year so it seems fitting to take some time and reflect back. One thing I can say with certainty at the end of year one is the HD community is the strongest, most passionate, most welcoming and fun communities I have ever been privileged enough to be a part of.

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Gracee’s Spectacular JourneyKTYPJP

On December 29th, 1998, Gracee Faith Young was brought into this world. She was a beautiful and happy baby who brought extraordinary amounts of joy into the lives of the people around her. Her teachers praised her self-confidence and marvelous social skills since she was a little girl. She was delightful and full of fun.

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HDYO Hot seat with Kristen PowersKTYPJP

Find out what happened when we interviewed HDYO board member Kristen Powers for the HDYO seat!

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3rd Annual German Young Adult ConferenceKTYPJP

Here at the HDYO News Team, we were excited to speak with Michaela, Lisa and Christian from Germany to find out more about their event, the 3rd Annual German Youth Conference!

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HDYO Hot Seat with HDYO Chair BJ ViauKTYPJP

Find out what happened when we sat down with HDYO Chair BJ Viau to interview him for the HDYO Hot Seat!

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Matt’s Blog - Happy 3rd Birthday HDYO: A special thank you to the volunteersKTYPJP

We quietly celebrated HDYO’s 3rd Birthday on Feb 7th this year and it’s safe to say HDYO has been successful and, most importantly, beneficial for young people impacted by HD worldwide. We’ve come a long way in a short amount of time. But I want to bring some attention on to the volunteers who make up what we call Team HDYO, because in all seriousness what HDYO does would not be possible without the work of these wonderful volunteers.

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Matt’s Blog - The North American HD Youth CampKTYPJP

You may have seen that on February 3rd we announced a very exciting new project: the North American HD Youth Camp! This is a brand new event available for young people who are impacted by HD aged 15-23 years from the US and Canada. I thought I would take the opportunity to blog about this wonderful new event especially for young people that will be taking place from August 24th-27th in Maryland, US.

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Testing for others: My experience of participating in Kids-HD studyKTYPJP

When thinking about taking a whole day to put your brain to the test and have others evaluate you… it’s not the most comforting thought, but neither is being at risk for Huntington’s Disease.

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North American HD Youth CampKTYPJP

HDYO and HDSA are excited to host the first ever North American HD Youth Camp. The goal of camp is to offer young people the chance to meet other young people impacted by HD, to learn about HD through educational workshops, to share experiences through share sessions and to have plenty of fun participating in the many on-site activities, such as swimming, ropes courses, paddle boarding, archery and much more. We hope young people attending camp will benefit by feeling less isolated, more supported, as well coming away from camp with an improved understanding of HD and strong peer connections with other young people in similar situations. There will be an experienced HD team of professionals and volunteers on-site to support young people at all times.

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My First HDSA ConventionKTYPJP

The shimmer of light aqua blue light shining from light sticks. One by one until hundreds of friends in that room were holding a light stick that shined across the giant room filled with the best friends that I would ever meet….the best day of my life.

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HDYO’s Awareness Tour in PortugalKTYPJP

In October I was very fortunate to be invited by the Portuguese HD Association to speak at two events: one in Lisbon and the other in Porto – two of Portugal’s biggest cities. The goal: to spread awareness of HDYO amongst families in Portugal!

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Learning to Live: Matt Ellison's JourneyKTYPJP

Huntington's disease is an illness which alters the lives of each and every person with which it comes into contact. Some become defeated, some become strong. Matthew Ellison has chosen to gain strength. Though pain seemed to be inevitable as a result of his childhood, Ellison seemingly defied all odds. As founder of the Huntington's Disease Youth Organization, Matt has effectively used his past as a means to improve the futures of youth around the world. Using his trials as driving forces, Matt overcame a childhood which lacked support in order to provide such aid to youth like himself around the world. Ellison's commitment and dedication has allowed for him to create a positive outlet for HD youth, and his story has allowed for a beautiful journey.

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An Introduction to HDYO’s News TeamKTYPJP

This message is to let our account holders know that over the next year you will begin receiving regular updates from HDYO regarding all things HD with the creation of the HDYO News Team!

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UK research: Talking to children about inherited genetic conditionsKTYPJPBelow is a research project at Kings College, London, which HDYO is supporting. If you think you and your family would like to take part please contact Emma on the email below.Talking to children about a genetic condition – a new and exciting opportunityA new and innovatory way of supporting parents to talk with their children about the genetic condition in their family has been developed. Researchers worked with parents, children and young people along with clinicians worked to develop the method and they now wish to test whether families do think it is useful.The method is called a...Find out more...
HDYO Launches in Polish – our 10th language!KTYPJPWe are delighted to announce that HDYO’s website recently launched in Polish thanks to the huge voluntary effort from our Polish translation team. HDYO’s website is now available in 10 languages making us slightly more multi-lingual than we were previously! But more importantly, reaching many more families and young people impacted by HD as a result.We are committed to making HDYO as globally accessible as we can and will continue to work hard on all languages to ensure that is the case.Matt Ellison Project Coordinator HDYOFind out more...
Swedish Youth ConferenceKTYPJP29-30 March, 2014The conference is open for you who are 18-35 years and grew up in a family affected by Huntington´s disease. The conference is also open for your partner. This is an opportunity to meet others who have similar experiences as you. It is also an opportunity to discuss topics that concerns you and get an update about research around the world.Download more information and a booking formFind out more...
HD STARKTYPJPInspired by the ‘Huntingtin in space project’, HD STAR is one of the SHA’s 25th anniversary awareness raising projects. Would you like to help awareness of HD reach the stars?On the 17th May SHA will send 500 messages of hope, inspiration and remembrance into orbit in a weather balloon and when it bursts at 25 miles above the earth they will be scattered for hundreds and thousands of miles. Each message will have return information on it so that we can discover just how far our awareness raising reaches!You can also get involved by joining our search and recovery teams, whose job will be to...Find out more...
HDYO Celebrates its 2nd Birthday!KTYPJPFebruary 7th saw HDYO turn 2 years old! It has been a wonderful 2 years of hard work and progress to improve the education and support young people impacted by HD around the world receive. In that time HDYO has grown to have 2 full-time staff, a volunteer team of around 130 (mostly young) people who have made a huge contribution to HDYO in a variety of roles. Our content has become highly-regarded and is now available in 9 languages thanks to our volunteer translator team. We’ve done projects with young people around the globe and continue to expand our reach to more areas. The website...Find out more...
18-35’s Young Adult Conference in England, 15-16 March, 2014KTYPJP15-16 March 2014The HDA in England & Wales is hosting its 6th annual young adult conference for 18-35 year olds on March 15th to 16th. It is a wonderful opportunity for young people impacted by HD in England and Wales to get together, share experiences, seek advice from professionals and listen to great talks from speakers such as Ed Wild, Hugh Rickards and personal stories from young adults themselves.The event costs £45 per person (that includes overnight hotel stay, food and the conference) - an excellent price. To book you can either go to the HDA website and download the booking form...Find out more...
HD Generations Project Survey – your experiences needed!KTYPJP21 November 2013In September 2013 SHAYP Life (Scottish Huntington’s Association Youth Project) was awarded £45,000 by the Young Start Fund to spearhead a national project called ‘HD Generations’. Working in partnership with HDYO, the two year project will focus on developing a Youth Roadmap workbook resource that young people can use to explore issues related to Huntington’s Disease (HD).By clicking on this survey link and completing the quick survey you will be helping to shape and create the finished resource.ThanksDavid Drain Specialist Youth Advisor Scottish Huntington’s AssociationFind out more...
2nd Youth Conference in Germany – register now!KTYPJP20 November 2013Young people (aged 18 – 35) from HD families in Germany and their partners are invited to the 2nd Conference especially for young people. It will take place from April 25th - 27th, 2014 in Duderstadt (near Goettingen). The German HD association “Deutsche Huntington-Hilfe e. V.” presents various German HD specialists talking about HD Basics, Care, Mental Health, Strategies from a legal perspective, HD Research process and participation. Feel free to share your experiences and ask your questions during the discussion groups on topics like At Risk – what to do? General...Find out more...
HDYO recruiting a youth worker in the USKTYPJP18 October 2013 We are delighted to announce that HDYO is currently recruiting for a brand-new, full-time youth worker in the Mid-Atlantic region of the US. Funding has been secured to create a 3-year project which will see the first ever HD youth worker in the US, helping young people and families in the Mid-Atlantic region (Washington DC, Baltimore and North Virginia). This is a hugely significant step for supporting young people and we are very excited about the prospects. This role is the result of collaboration between HDYO, the Griffin Foundation and HDSA, all working together to...Find out more...
HDYO is now available in FrenchKTYPJP1 October 2013Bonjour! We are delighted to announce that the HDYO website and its content are now available in French! This means young people in France and many regions around the world now have access to appropriate information about HD and have a place to go for support. This is a huge step forwards for HDYO, French becomes the 8th language HDYO’s website is available in!The credit is with the French HDYO Translator Team who did a wonderful job getting the website translated. Thank you to our wonderful translators for their hard work and watch out for more languages in the coming...Find out more...
UK research: talking to children about inherited genetic conditionsKTYPJP4 September 2013Below is a research project at Kings College, London, which HDYO is supporting. If you think you and your family would like to take part please contact Emma on the email below. The research project “Talking to Children about inherited genetic conditions” launched on 1st September 2013. The project works collaboratively with families (parents, children and young people) with an inherited genetic condition to develop an intervention that will support families to communicate more effectively with their children (<18 years) about the genetic condition affecting their family and...Find out more...
HDYO launches in Norwegian and Italian!KTYPJP3 September 2013It is with fantastic pleasure that we announce HDYO’s website is now available in both Norwegian and Italian! This would not have been possible without the brilliant work and effort of the volunteers that give their time to HDYO. For them, we are truly grateful!Italian and Norwegian become the 6th and 7th languages available on the site, increasing the multi-lingual nature of our site even further and reach more young people and families impacted by HD in the process.If you are viewing the site for the first time in Italian or Norwegian, welcome! We hope you enjoy the site....Find out more...
European HD Youth Camp 2013 – A big successKTYPJP17 July 2013 During the 7th - 14th July, 2013, HDYO co-organised the European HD Youth Camp with several European HD Associations. The camp, which attracted over 40 young people from 8 different EU countries, was filled with fun activities, educational and support sessions. The camp was held at a center for families with rare diseases in Burgos, Spain. Many of the young people who attended camp experience isolation throughout the year in their dealings with HD. But camp provides an opportunity to be around young people in similar situations, removing the feelings of isolation, and hopefully...Find out more...
HDYO wants your feedback!KTYPJP17 June 2013We've created a feedback survey especially for our users/fans. We want to know what you think of HDYO as an organisation and also what you feel HDYO should be doing for young people impacted by HD both in your local region and globally. Please take the (short) time to fill out this anonymous survey and provide your feedback. It would be very much appreciated and it is so important we hear each individual's thoughts and suggestions. You do NOT have to be a young person to provide feedback – we want to hear from everybody within the HD community and those that use our service. Use...Find out more...
Michelle's Poetry 4 HD Project – your HD poems wanted!KTYPJP12 June 2013Michelle from Canada is creating a poetry book for HD and is looking to fill the book with poems from different people from around the world who are impacted by HD. See her message below and if you feel like getting involved, you can send your poem to the email address as the bottom!“It is undeniable that poetry is a most powerful and profound medium of human expression. The psychological content found in poems goes beyond which is ordinarily found in conventional, scientific inquiry. Writing poetry is an invaluable means of self-expression, permitting the writer a voice for...Find out more...
HDYO will put on its first ever European Summer camp!KTYPJP22 May 2013 We are delighted to announce that HDYO has been successful with receiving funding from the EU to put on its first ever HDYO camp. The camp will be held in Burgos, Spain and will be available for young people between the ages of 16-28 from any European country where the HD Association supports the project. These countries include:Spain Germany Ireland Northern Ireland Scotland Norway Sweden Poland Belgium There are places for 40-45 young people and camp will take place during the week of 7th-14th July. Places for camp are being decided by the local HD Associations in each country...Find out more...
Peter Earl Association to hold kids camp in NSW, AustraliaKTYPJP21 May 2013 We’ve received word from the Peter Earl Association that they will be running a kids camp at Berry sport and rec in New South Wales, Australia from the 25th-27th September. The camp is for kids between the ages of 10-14 and will provide an opportunity for kids to get away from HD for a few days. All costs are covered. For more details see the Peter Earl Association's websiteMatt News Update Reporter HDYOFind out more...
Can you help? We’re recruiting more translators and volunteersKTYPJP13 May 2013 At HDYO we are keen to ensure that our content is available in as many languages as possible and are always looking for new volunteer translators to join our growing translation team and help with this project.We are also looking for volunteers to help create subtitle translation documents for the translators to translate. These documents are important to allow HDYO to show its videos with subtitles in all languages.If you are interested in helping out please contact feedback@hdyo.org and state your interest, we will get back to you shortly afterwards to discuss the roles in...Find out more...
Erika highlights the Enroll-HD study: A worldwide research study we can all participate inKTYPJP16 April 2013Hello friends, Many of you may know about an observational trial called ENROLL-HD - for those of you that don't, it is a huge study done in 19 countries (14 different languages) at 240 medical centers. The coolest thing about the study: everyone who is at least 18 can participate! Anyone with affiliation to HD has a place in this study. There is no need to get tested if you are still undecided or prefer not to know; your gene status will not be disclosed. The appointments are done annually and you will be providing useful information to researchers so that we can have better...Find out more...
HDYO Receives official support from the Swiss HDAKTYPJP16 April 2013 We are thrilled to announce that the Huntington's Disease Association in Switzerland has provided their official support for HDYO and its projects. Their support will help HDYO spread educational information and support to young people in Switzerland who are impacted by HD, which is a really crucial step for us here at HDYO so we're delighted to have the support from the Swiss HDA!Thank you and we appreciate your support.Matt News Update Reporter HDYOFind out more...
HDYO Receives official support from the Belgium HDAKTYPJP10 April 2013We are thrilled to announce that the Huntington's Disease Association in Belgium has provided their official support for HDYO and its projects. Their support will help HDYO spread educational information and support to young people in Belgium who are impacted by HD, and hopefully help us to get HDYO online in French!Thank you and we appreciate your support.Matt News Update Reporter HDYOFind out more...
HDYO Receives official support from the Dutch HDAKTYPJP28 March 2013 We are thrilled to announce that the Huntington's Disease Association in the Netherlands has provided their official support for HDYO and its projects.Thank you and we appreciate your support.Matt News Update Reporter HDYOFind out more...
HDYO recruits its first staff member!KTYPJP26 March 2013 HDYO is delighted to announce that we have received a wonderful grant from the Griffin Foundation that will allow us to create our first ever full-time paid staff position!Matt Ellison, who founded HDYO last year, will be taking on the role of project coordinator. The role involves managing all HDYO projects as well as coordinating the ever increasing HDYO volunteer team which now nears a total of 90 individuals who all do such a fantastic job. Matt will commence his new role on April 1st, 2013 and we all wish him the very best.We see this recruitment as a vital step in HDYO’s...Find out more...
HDYO Receives official support from Swedish HDAKTYPJP24 March 2013 We are thrilled to announce that the Huntington’s Disease Association in Sweden has provided their official support for HDYO and its projects for 2013. Their support will help HDYO spread educational information and support to young people in Scandinavia who are impacted by HD, which is a really crucial step for us here at HDYO so we’re delighted to have the support from the Swedish HDA!HDYO is currently supported officially by 15 HDAs worldwide and continues to become a truly collaborative global approach to supporting young people impacted by HD.Thank you and we appreciate...Find out more...
HDYO Receives official support from Huntington's Western AustraliaKTYPJP20 March 2013 We are thrilled to announce that the Huntington’s Disease Association in Western Australia has provided their official support for HDYO and its projects for 2013. Their support will help HDYO spread educational information and support to young people in Australia who are impacted by HD. The HDA in WA has recently become one of the few HDAs to have their own youth worker and youth service to support young people in their region. HDYO looks forward to working with HDA WA to continue to improve support for young people impacted by HD.Thank you and we appreciate your support.Matt ...Find out more...
Young Adults Education Day, April 27th – Wisconsin, USAKTYPJP21 February 2013On April 27th between 12-4pm at the Country Springs Hotel, Waukesha, Wisconsin, USA. The Huntington’s Disease Youth Organization (HDYO) and Huntington’s Disease Society of America (HDSA) are teaming up to put on an afternoon dedicated to specifically tackle topics that are important to young adults affected by HD. If you are between the ages of 18-40 and are interested in learning more about Huntington’s disease along with meeting other who are affected, then this meeting is for you.Topics to be covered:Young Adult Support around the Country Huntington’s Disease 101 Living...Find out more...
Spaces available: 18-35’s Young Adult Conference in England, 23/24 FebruaryKTYPJP12 January 2013The HDA in England & Wales is hosting its 5th annual young adult conference for 18-35 year olds on Feb 23rd and 24th. It is a wonderful opportunity for young people impacted by HD in England and Wales to get together, share experiences, seek advice from professionals and listen to great talks from speakers such as Ed Wild and Charles Sabine. The event costs £45 per person (that includes overnight hotel stay, food and the conference) - an excellent price. To book you can either download the booking form and post it to the HDA, or email/call the HDA and book directly with them....Find out more...
HDYO becomes available in Portuguese, Dutch and ItalianKTYPJP10 January 2013 We are delighted to announce that the HDYO website and its content are now available in 3 new languages (Portuguese, Dutch and Italian) thanks to our wonderful translation teams for each language. Their hard work has now made support and educational content available via HDYO to young people impacted by HD in many regions worldwide. Portuguese, Dutch and Italian take the total number of languages HDYO is available in to 6 (English, Spanish and German being the other 3), with more languages set to launch later in 2013. If you are viewing the site for the first time in...Find out more...
1st Youth Conference in Germany – register now!KTYPJP22 November 2012Young people (aged 18 – 35) from HD families in Germany and their partners are invited to the 1st Conference especially for young people on April 13th & 14th, 2013 in Stuttgart.The German HD association “Deutsche Huntington-Hilfe e. V.” is presents various German HD specialists talking about HD Basics, Coping with HD, Genetic Testing, Care and involvement in HD research and offering discussion groups for topics like Relationships, Talking to kids about HD, Having Children and Legal situation at work.Joe Guiliano (CHDI) will be there to give the hottest News on HD research...Find out more...
HDYO: Breaking down barriers for young peopleKTYPJP3 November 2012In February 2012, the Huntington’s Disease Youth Organization (‘HD-YO’) was founded with the aim of supporting and educating young people impacted by Huntington’s disease (HD) around the world. HDYO was created to fill a massive gap in the HD community with regards to youth support, which was recognised by many young people as a serious issue. It is fair to say that since launching in early 2012 HDYO has been an astounding success, providing a valuable tool to empower young people through knowledge and understanding, and making a real difference for many youth searching for...Find out more...
Are you trying to decide whether to be tested for the HD gene?KTYPJP22 October 2012Hi,Just a quick reminder about a possible documentary about Huntington's for UK television. We are hoping to make a television programme about young people with Huntington's in their family, who are trying to decide whether to have a genetic test themselves.If you live in the UK and you are trying to decide whether to have genetic testing or not, 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...Find out more...
The Irish HD Association offers their official support to HDYOKTYPJP15 October 2012 We are delighted to add the Irish Huntington’s disease association to our long list of official supporters. The Irish association support what HDYO is doing for young people in the HD community and have expressed their support with an official contribution to HDYO and our projects.Matt, News Update Reporter, HDYOFind out more...
The Danish HD Association extends their official support to HDYOKTYPJP10 October 2012 It is with great pleasure that we announce the Danish Huntington’s Association’s official support for HDYO. The HDA in Denmark have provided a wonderful contribution to HDYO and fully support the important task of improving support for young people within the HD community. We look forward to a successful partnership. Matt, News Update Reporter, HDYOFind out more...
Website update (Oct 2012)KTYPJP1 October 2012 The HDYO website underwent some upgrades recently in order to add and improve to the website’s ability to connect young people impacted by HD worldwide. There were some improvements to the HDYO forum, which can now accept links in posts as well as paragraph spacing. While the website received a few new design upgrades including the ability to ask a question directly from the HDYO website now (rather than going through email). The same webpage form is now possible in the creative expression section and the feedback + support contact options… making it easier for young people...Find out more...
HDYO confirms youth service partnership with HDAs in both Ireland & Northern IrelandKTYPJP23 September 2012 Team HDYO recently went over to Belfast to speak about HDYO at a HD conference in Northern Ireland. Additional to this there was a meeting held between the HDAs in Ireland, Northern Ireland (NI) and HDYO to discuss the creation of a youth service for young people in both regions impacted by HD. Both the HDAs in Ireland and NI are keen to develop a youth service and are working together to achieve this goal. They have both asked for HDYO to get involved and help with the progression of the project and to support young people in Ireland & NI to shape their own youth...Find out more...
HDA in Northern Ireland provides official support for HDYO!KTYPJP22 September 2012 We are delighted to announce that the HDA in Northern Ireland has been in contact and provided a financial contribution to HDYO as part of becoming an official supporter of our cause. The HDA in NI become the 11th HDA around the world to officially support HDYO. The support of the HDA in Northern Ireland came as members of Team HDYO went over to Belfast to speak about HDYO at a HD conference in Northern Ireland. There were several young people at the event and all of them were wearing their HDYO t-shirts for the HDYO talk! How awesome is that!Matt, News Update Reporter, HDYOFind out more...
HDYO is now available in SpanishKTYPJP13 September 2012 Hola! We are delighted to announce that the HDYO website and its content are now available in Spanish! This means young people in Spain and many regions of South America now have access to appropriate information about HD and have a place to go for support. This is a huge step forwards for HDYO, Spanish is the 3rd language the site is now available in (English and German being the other two). The Spanish HDYO Translator Team did a wonderful job getting the website translated. Thank you to our wonderful translators for their hard work and watch out for more languages in...Find out more...
HDYO celebrates 6 months of success!KTYPJP7 August 2012 HDYO is officially 6 months old!!!! Check out these stats for our first 6 months:125,000+ website views (with the last month being our highest) HDYO's educational sections have been shared through our official sharing system an incredible 1,100+ times!!! (WOW) 275 accounts created enabling access to the forum 10 HD Associations worldwide officially supporting HDYO, providing us with financial support too The website is available in 2 languages, with 15+ other languages being translated behind the scenes as we speak! Team HDYO consists of almost 70 (SEVENTY) young volunteers...Find out more...
HDYO is now available in GermanKTYPJP28 July 2012 After many hours, days, weeks and months of hard work from our HDYO German Translator Team, we are thrilled to announce that the HDYO website is now available in German! It is the first language (excluding English) to be available on the website but our team of almost 70 individuals are working hard behind the scenes to convert HDYO into more than 15 languages! Thank you to our wonderful translators for their hard work and watch out for more languages in the coming months.Matt, News Update Reporter, HDYOFind out more...
HDYO: Looking for experiences to help shape our bereavement & loss sectionKTYPJP19 July 2012Hi Everybody,HDYO is creating a brand new section to cover the topic of loss and bereavement. The section will focus on helping and supporting young people to cope with the loss of someone to HD or anything else.We are looking for young people impacted by HD who have gone through either loss or bereavement to share their experiences with HDYO so that we can learn from what you went through and produce the most accurate and appropriate support & information for young people who may currently be experiencing such situations.Any young person who feels they would like to share their...Find out more...
HDYO: Looking for experiences to help shape our emotional wellbeing sectionKTYPJP19 July 2012Hi Everybody,HDYO is creating a brand new section to cover the topic of emotional wellbeing. The section will focus on helping and supporting young people impacted by HD who may be experiencing such things as depression, anxiety, self-harm, eating disorders or suicidal thoughts.We are looking for young people impacted by HD who have either gone through or are going through depression, anxiety, self-harm, eating disorders or suicidal thoughts to share their experiences with HDYO so that we can produce affective and appropriate support & information for young people who may be...Find out more...
HDYO’s redesigning our fundraising section: we want your ideas!KTYPJP19 July 2012Hi there,If you’ve been on the HDYO website before you may have come across a rather less colourful area of the site: the fundraising section. We had plans for the fundraising section but due to some design delays leading up to launch we were never able to get them implemented. So now we are looking to completely redesign the fundraising section and we are looking for a team of young volunteers to help with the project by giving their ideas and opinions on what the fundraising section should look like. Involvement in the project will entail an initial Skype call with some...Find out more...
HDYO Receives official support from the Chilean HDAKTYPJP12 July 2012We are thrilled to announce that the Huntington’s Disease Association in Chile has provided their official support for HDYO and its projects. Their support will help HDYO spread educational information and support to young people in South America who are impacted by HD, which is a really crucial step for us here at HDYO so we’re delighted to have the support from the Chilean HDA!Thank you and we appreciate your support.Matt, News Update Reporter, HDYOFind out more...
Can You Help with Research for UK HD Documentary?KTYPJP2 July 2012Hi,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...Find out more...
UK HD Documentary project needing participantsKTYPJP25 May 2012HDYO 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:Hi,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...Find out more...
HDYO Interview Project: Parents and children from England wantedKTYPJP24 May 2012HDYO is planning to do a series of interviews with parents and their children on the topic of 'talking to kids about HD'. We intend to interview both parent and child at the same time and hear firstly how the parent initially discussed HD with the child (what approach they used) and then go on to explore things such as what both parent and child thought of that discussion, how the parent felt before and after the chat, how the child felt, have there been more discussions since that first chat, what have the implications been since the discussion and whether there is anything...Find out more...
HDYO's Online Store Opens!KTYPJP17 April 2012 It is with great pleasure that I announce the opening of HDYO's online store! This new area of the website will contain all the merchandise HDYO creates as we progress as an organization. All profits made from any items in the HDYO store will go towards funds for more projects to help improve support for young people impacted by HD around the world.The store is easily accessible from any page on the website. Just click on the gigantic button labelled 'Store' (oddly enough), and that will take you straight to where you want to be! The first item available in the HDYO store is...Find out more...
Profiles and personal messaging added to the HDYO websiteKTYPJP6 April 2012 The HDYO website underwent some subtle upgrades this week in order to add and improve to the website's ability to connect young people impacted by HD worldwide. Along with slight improvements to the forum, there were two new additions to the site in the form of profiles and personal messaging.People who have accounts on HDYO can now view each other's profiles and find out a bit more about one another. These can be accessed when on the forum by simply clicking on another member's name. As a result of the profiles being launched, two new optional fields have been added to...Find out more...
Official support for HDYO arrives from GermanyKTYPJP27 March 2012 HDYO received the wonderful news this week that Deutsche Huntington-Hilfe, the German HD Association, has decided to provide their official support for HDYO. Their official support means HDYO now has 8 HD Associations supporting our cause since launching in February 2012. Duetsche Huntington-Hilfe has also provided a contribution to HDYO's financial budget for 2012 - which will allow HDYO to continue providing educational information and support to young people impacted by HD worldwide.The HDYO website and content will be available in German in the next few months after some...Find out more...
Roma and Milano both confirm their official support for HDYOKTYPJP25 March 2012 HDYO is thrilled to announce that it has received official support from two Italian HD Associations (Roma and Milano) in the space of a week. Their official support means HDYO has received the support of no less than 7 HD Associations since launching in February 2012. Both Milano and Roma have also provided a contribution to HDYO's financial budget for 2012 - which will allow HDYO to continue providing educational information and support to young people impacted by HD worldwide.HDYO thanks Roma and Milano for their huge show of support and faith in our plans for the future. We...Find out more...
HDYO Strategic Plan 2012KTYPJPHuntington’s Disease Youth OrganizationStrategic Plan 2013-2015Planning Task ForceB.J. Viau Task Force Chair HDYO Chairman of the Board Minneapolis, U.S.ACatherine Martin HDYO Vice Chair Glasgow, ScotlandBrynne Stainsby Secretary, HDYO Board Toronto, Canada Matt Ellison Founder and Project Coordinator Coventry, EnglandKey TermsHD = Huntington’s Disease HDA = Huntington’s Disease Associations HDYO = Huntington’s Disease Youth Organization YP = Young People HCPs = Health Care Professionals IntroductionThe Huntington’s Disease Youth Organization (HDYO) is a youth-led...Find out more...
The HDA confirms their official support for HDYOKTYPJP20 March 2012 Great news for HDYO this week as the HDA in England & Wales signed the HDYO business plan and confirmed their official support for the organization. The HDA have long been admirers of HDYO and helped set up HDYO in the first place, so it was fantastic for both sides to be able to make the partnership official. The HDA has provided just over 25% of HDYO's planned budget for 2012, the biggest contribution yet to the HDYO cause!Cath Stanley, Chief Executive of the HDA, said "HDYO is a great initiative and essential resource created by young people for young people. It will form...Find out more...
Huntingtons Victoria joins the list of official supporters for HDYOKTYPJP8 March 2012 HDYO is thrilled to announce that Huntingtons Victoria, one of the Australian States HD Associations, has confirmed their official support for HDYO and our projects for 2012. Huntingtons Victoria becomes the 4th HD Association to provide their support to HDYO since we launched at the beginning of February. Huntingtons Victoria has provided a substantial contribution to HDYO's planned budget for 2012. Tammy Gardner, General Manager at Huntingtons Victoria had this to say about supporting HDYO:'I see this as an initial exciting step towards a productive working relationship...Find out more...
The HSC confirms their official support for HDYOKTYPJP9 February 2012 HDYO is delighted to announce that the Huntington's Society of Canada (HSC) has confirmed their official support for HDYO and our projects for 2012. The HSC become the second HD Association to give their support to HDYO, after the HDSA confirmed their support for the organization last week. The HSC has provided 25% of HDYO's planned budget for 2012!We are hugely appreciative of the HSC's support and belief in HDYO's mission.The HSC and HDYO will work towards improving support for young people impacted by HD in Canada.Matt, News Update Reporter, HDYOFind out more...
The HDSA confirms their official support for HDYOKTYPJP7 February 2012 As HDYO launched it received the fantastic news that the Huntington's Disease Society of America (HDSA) has signed the HDYO business plan and confirmed their official support for the organization. The HDSA have been providing 'unofficial support' for several months with regards to helping HDYO with such things as creating a business plan, so having HDSA sign that same business plan a few months later and confirm their official support for our cause was phenomenal news. The HDSA has provided 25% of HDYO's planned budget for 2012!HDSA is the first HD Association to confirm...Find out more...

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