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

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.

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

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!

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.

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.

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.

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

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

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

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.

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

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.

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.

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.

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.

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

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!

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

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.

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.

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.

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.

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.

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!

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.

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!