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.

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

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

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.

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

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.

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

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

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.

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!

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.

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.

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!

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.

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…

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!

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.

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

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

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!

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

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.

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.

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.

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!

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