Young People Affected by Huntington disease (YPAHD) was created in 2008 to connect youth across the country. YPAHD helps youth think about and discuss topics like genetic testing, family life, and dating with HD, and supports them in the struggles of being affected by the disease.
In 2012, YPAHD created a one-day youth conference – YPAHD Day. Every other year, these conferences are held regionally in Western, Central and Eastern Ontario. YPAHD Day attendees appreciate the opportunity to meet other youth who understand their situation and benefit from much needed education and support.
In November 2017, YPAHD Days were held in Kelowna, Toronto and Moncton. Youth had the chance to bond, be understood and share their experiences. Attendees left YPAHD Day with energy, optimism and a new support system that they can call on when needed.
Attendees like Celine, who attributes her experience at YPAHD Day as the reason why she has gotten more involved, planning the first annual Bowling for HD event in Sarnia, Ontario in March which raised over $1,200. “I met so many amazing people affected by this disease which made me realize that I am not alone in this fight,” says Celine. “There are people out there that truly understand what I am going through. I want to spread awareness and raise funds so that the many other people affected by HD can still have some sort of hope for their future.”
Hannah from Manitoba felt the same way after leaving the conference. “YPAHD Day was beyond incredible. I got to meet such a lovely community that is so full of support,” says Hannah. “I’ve been involved ever since I left through some online group chats, but also by planning a fundraiser/awareness day for HD in May at my school!”
For Nicole from Whitby, Ontario, she may not be ready to run her own fundraiser yet, but YPAHD Day gave her the push to be involved with her local Chapter in helping to sell Amaryllis and setting up for their recent information session. She really left the conference feeling understood. “Before, I had people that wanted to support me, but no one that understood me,” says Nicole. “YPAHD Day made me feel really connected and finally understood. The day really made me think about how important it is to not only raise funds and awareness, but also to advocate for YPAHD.”
While inevitably there are some heavy moments when youth dealing with HD get together for YPAHD Day, there are also several moments filled with laughter and good times. They are learning what they need to learn and asking the questions they need to ask, but they’re doing it with a very light-hearted approach.
“We are all important to one another,” says Nicole. “Every single person in YPAHD is just so positive, open and connected. It’s amazing to know I have people who understand me and the journey I am facing.”
National Volunteer Week is April 15-21. We are taking the time to celebrate and thank all of our dedicated volunteers in the HD community! We appreciate the contributions of time and effort from all of our incredible volunteers.