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Youth Affected by Huntington Disease to Come Together Across Canada

(Waterloo, ON) November 13, 2019 – As a chapter of the Huntington Society of Canada (HSC), Young People Affected by Huntington Disease (YPAHD) aspires to a reliable treatment for Huntington disease (HD). And, in 2012, YPAHD created a one-day youth conference – YPAHD Day. On November 16, 2019, three simultaneous YPAHD Days will be held in Calgary, Toronto and Halifax. Youth will enjoy the chance to bond, be understood and share their experiences.

Attendees will include young people like Celine, who gives the nod to YPAHD Day as the reason why she has become more active in HD fundraising, having planned the first annual Bowling for HD event in Sarnia, ON two years ago, which raised over $1,200.

“I meet so many amazing people affected by this disease which makes 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.”

HD is an inherited, debilitating brain disorder that is fatal and incurable. Each child born to a parent with HD has a 50% change in inheriting the same fate. About one in every 7,000 Canadians has HD and approximately one in every 5,500 is at-risk of developing the disease. Many more are touched by HD whether as a caregiver, a family member, or a friend.

Attendees leave YPAHD Day with energy, optimism and a new support system that they can call on when needed. 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.

Young People Affected by Huntington Disease (YPAHD)

YPAHD strives to:

  • Provide a community and support network for young people affected by HD
  • Increase public awareness thereby enabling others to understand the disease
  • Raise funds to deliver services for those living with HD and to further research in order to slow and prevent HD.
  • Listen to and advocate for the needs and goals of young people affected by HD through the communication mechanisms provided by the Huntington Society of Canada

YPAHD was created in 2008 to connect youth ages 14-35 across the country and 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. To learn more, visit www.huntingtonsociety.ca/learn-about-hd/youth/

For More Information:
Lianne (Lia) Appleby

Communications and Marketing Manager
519-749-8491, ext. 130

lappleby@huntingtonsociety.ca


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