International Young Adult Conference Brings Representatives from 13 Countries
to Share Experiences and Plan Programs for
Young People affected by Huntington's disease



On Wednesday, June 22, 23 representatives from 13 countries, including five NYA members, gathered together to discuss ways they could provide support for each other, an the many young people affected by HD throughout the globe.


Each attendee presented the "state of HD for Young People" in their homelands, describing the type of support available, whether there was a national association, and if that association had youth-specific courses, and how the attendees and their friends back home faced the challenges of HD.


Following the presentations, the participants broke into working groups to develop ideas on the types of resources they would like to make available in their own countries. In addition there was discussion of creating an international resource of information about HD and coping with HD targeted to young people. The Group has already planned subcommittee meetings via Skype and hopes to have materials to share by the end of 2011.


Matt Ellison from Coventry, England shared his thoughts on the international meeting and attending the HDSA Convention.


International crowd at the HDSA Convention!

The HDSA Convention in Minneapolis this June was experienced, for the first time, by a group of international young people, whose families are affected by HD. There were 22 young people from 11 different countries who were all invited to the convention as part of an international youth meeting to discuss improving youth support globally for young people affected by HD. The youth meeting took place on Wednesday 22nd June, two days before the convention officially kicks-off. It was an incredibly productive meeting, with the 22 young people spending the morning exchanging youth support reports from their country and learning what the global level of support is like (very poor). Having listened to all the issues, difficulties and challenges that we face with providing support to young people, the afternoon was spent discussing how best to improve youth support in each country and also on an international scale, by working together. The Huntington’s Disease Youth Organisation (HDYO) was introduced to the group, HDYO is an organisation being created by young people from families affected by HD, and is aimed at providing support, education and information for all young people around the world. A lot of positive ideas and plans were thought up during the youth meeting, with HDYO being widely received by everybody at the meeting (including the HDSA staff). Each young participant generated a plan of action – a list of hurdles they were going to try and overcome in their own country, in the hope of improving support for young people. The group will work together in the coming years, through HDYO, to keep updated with progress and offer support to other nations when able to.

The next day the young internationals attended the ‘NYA day’, which was a great experience for all. The NYA and HDSA did a good job putting the day together and it was a great opportunity for young people to get together and talk about HD or life in general. I know the entire international group fully enjoyed the day with the American youth, making friends with many throughout the day! In the evening there was a trip out with the NYA group to a place called ‘Feed My Starving Children’, where all the young participants got the chance to give something back. It was a fantastic experience for all who went and it was also a great bonding exercise for the youth group.

As for the convention itself, I can’t speak for all the international youth participants, but I know many of them enjoyed the experience hugely. The mere fact there was over 1,000 people attending the convention (mainly down to the scholarships from both Lundbeck and the Minnesota Chapter) was incredible, the majority of the young participants had never seen so many people connected through HD before. The wide variety of topics covered and sessions available was fantastic and I personally was pleased to see support sessions for young adults, teens and children at the convention. Young people almost never get to speak with a professional about HD, convention provides that opportunity for those lucky few. It can only be beneficial for the young person to attend these sessions. The international youth group continued to meet throughout, having two short sessions each morning of the convention to discuss different topics such as how to make research studies interesting to young people. These sessions were very useful and also attended by professionals such as Marcy McDonald, Joe Giuliano from CHDI and Sean Thompson for PREDICT-HD.

On the final night the international participants attended the dinner/dance gala, which was excellent. The awards given out to people who have gone
above and beyond was a nice touch, one which the internationals very much liked. Once the awards were all handed out we dined and danced with our young American friends until the night was through. Overall it was an amazing experience for all the international youth participants, with a lot of productivity, energy and fun had by all. Perhaps unsurprisingly, all are now very keen to go to Vegas next year!


Matt Ellison