March 2, 2015

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!

From the 15th to the 17th of May, the 3rd conference for young people will be held in Germany, Muelheim, North Rhine-Westphalia. This event is taking place in “Wolfsburg”, at a catholic academy with a conference centre and hotel.

There are expected to be 70-80 young people from HD families, aged 18-35, as well as 10-15 expert HD speakers! Anybody who is affected by HD, as well as partners and friends, are welcome to come to the event.

The schedule for the event is as follows:

Friday – Warm up and explanation of the goals of the event, as well as getting to know each other. Newcomers will be part of a basic session, and others will be involved in something creative and fun! This is followed by a get together.

Saturday – Educational session on options for having children, insurance and coping strategies. This will be followed by discussion groups on various topics such as genetic testing, future planning, care, partners, HD in the public, etc. The afternoon will involve climbing, geo caching and archery, followed by an update on the latest HD research. There will then be another get together where a movie will be shown.

Sunday – Participants can learn about HD therapies and care, as well as having the opportunity to meet Jeroen De Schepper, who completed a bike tour across Europe for HD in 2014!

We asked if the event took long to prepare, and if it was worth it, and Michaela, Lisa and Christian stated that “it takes about one year to prepare this event and a team to manage everything. Oh yes, it is worth each single minute.”, so this event is highly anticipated and is going to be great!

This seems like a fantastic opportunity for anybody living in the area and dealing with Huntington’s Disease in some way. Not only is it an excellent learning opportunity, but also a chance to meet and speak with others and share experiences and coping strategies.

For those who participated in the previous two conferences, this year is going to be even bigger and better! So far an additional 30 people are expected, compared with the 50 participants in 2014. People come from all over Germany to take part, and this year is no exception! “We do some activities during the conference – instead of sitting and listening all day long. A team from the University of Ulm (HD center) offers Enroll HD visits for those you are not participating yet. Beside the sessions everybody is free to have a break and relaxing massage.”

Last year, from the 2nd Annual German Youth Conference, excellent feedback was received!

“I’m impressed how you get to learn others in a very short period of time.”

“This conference was a great success. It’s the only chance for me to meet others, listen to their stories, share experiences. I gained a lot of energy.”

“It was a mixture of hope and truth. I learned a lot and will change some things in my life.”

“I was afraid meeting people affected by HD and see my possible future. But in fact it was a very positive experience for me.”

Thanks to Michaela, Lisa and Christian for letting us find out about their event, we wish them all the best for the upcoming conference! If you’re a young adult in Germany and would like to learn more or apply to attend this event, contact: jugend@dhh-ev.de

Claire Trythall
News Team Reporter
HDYO