July 21, 2017
By Meghan and Natalie
The Huntington Society of Canada (HSC) supports an amazing program that brings youth from all over the country together. Young People Affected by Huntington Disease (YPAHD) is our national, virtual youth chapter that gives youth aged 14-35, who are affected by Huntington disease (HD), a community and support network to connect. It allows young people to relate to, lean on and talk to others who are facing the same situation. YPAHD Day occurs on an annual basis and gives youth all over Canada the chance to connect and come together in a major Canadian city, to take part in some fun activities. YPAHD Days are one day conferences that are created by youth for youth.
Every year, HSC offers funding opportunities for two YPAHD members to attend NYA Day (National Youth Alliance or NYA is the US counterpart of YPAHD). This year, Natalie and Meghan, were selected. Below, they share their experiences and tell you why they are looking forward to this year’s YPAHD Days coming up in the fall!
Top Right: Natalie, Bottom Right: Meghan
My HD journey began when my grandma was diagnosed at the age of 72. Less than a year later, my mom tested positive which leaves my twin sister, older brother, and myself at-risk. Since my grandma passed away about 3 years ago, there is currently no one in my family who is symptomatic.
Being at the beginning of my journey with HD, I haven’t had a lot of involvement with HSC/ YPAHD. I stumbled upon a Facebook post saying YPAHD had funding for two delegates to attend NYA day and conference. I applied on a whim and was ecstatic when I was told I was going! The best part of NYA day was seeing children and young adults of all ages connecting and supporting one another. The most uplifting thing was learning the progress being made on clinical trials. At the upcoming regional YPAHD day, I look forward to introducing my sister to the YPAHD family for the first time so that she too can be inspired as I have, being surrounded by incredible people!
Meghan (left) and Natalie (right)
From right: Meghan, Natalie and other NYA youth
Recently, I attended the NYA (National Youth Alliance) Day and the HDSA (Huntington Disease Society of America) National Conference. This was the largest gathering of the HD community by far with over 1000 people in attendance.
NYA day was full of compassion, support, inspiration and fun! The amazing organizers created a day for the youth to connect and play. The speakers were incredible! I heard many stories of heartache and heroism – people fighting for the rights of their friends and family.
What amazed me most is the huge network of researches, clinicians and community members that are working to find a cure and improve the quality of life for people affected by HD.
It was an honour to be there and connect with some of the most loving and compassionate people, including my awesome roommate! I’ve been working with HSC and YPAHD for several years, offering Yoga as Therapy seminars, fundraising and advocacy. As the new Toronto Chapter President I look forward to expanding our initiatives here and attending the next YPAHD Day! If you would like to join our #teamHD contact your local Chapter or YPAHD representative.
To learn more about YPAHD and/or YPAHD Day, and to register for one of the three YPAHD Days, please click here.