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, Catherine and Celine were selected. Below, Catherine shares her experience.
I am incredibly grateful that I was given the opportunity to represent YPAHD at the 2018 NYA Day and HDSA Convention. It was a busy weekend that was full of hope and excitement for the future. I was able to gain insight into many topics of interest which I believe may be useful for future YPAHD Days. In addition, I gained immense knowledge relating to current research and clinical trials which has instilled much hope for the future.
On June 7th, I attended NYA Day which began with HD 101 with Dr. Ed Wild and Dr. Jeff Carroll. This session focused on the basics of Huntington’s Disease and the researchers opened the floor to questions from NYA members. There were numerous questions relating to current clinical drug trials, as well as research that utilizes stem cells. There was great interest in the results of the first human trial of a huntingtin-lowering drug, IONIS-HTTRx, as it has demonstrated that it reduced mutant huntingtin and can be administered safely. Then, I attended a session on self-care, a concept that is incredibly important to individuals in our community as we often solely focus on caring for our loved ones with HD. I was also able to attend a session on advocacy and fundraising. This session showcased many of the successful events that NYA members have organized and provided me with ideas for future events in my community. Lastly, I participated in several ice-breaker activities which allowed me to connect with NYA members. I was surprised how little NYA members knew about YPAHD, so this was a great opportunity to make NYA members aware of the support we provide to young people in Canada.
June 8th was the first day of the HDSA convention which began with the opening ceremony. There were many break-out sessions and it was very difficult to decide on which sessions to attend. The first session I attended explored the swallowing function and how it changes with the progression of HD. This session was presented by a speech-language pathologist and was quite informative. In addition, she identified strategies to continue oral nutrition in the safest manner and provided suggestions for modifying the diet and environment to ensure safe eating. Next, I attended a session called “Ask the Scientist… Anything!” which was also presented by Dr. Wild and Dr. Carroll. Again, the audience had many questions relating to IONIS-HTTRx. However, many people were interested in learning about what will happen next in this trial. I also attended a session on DNA repair and stem cells which was presented by Dr. Tamara Mauri and Dr. Sarah Hernandez. This research topic was new to me and was quite interesting! Lastly, I attended the NYA talent show – they have some really talented NYA members and were able to raise $30,000!
June 9th began with a research breakfast which was followed by a HDSA research forum. This session was titled “The Ongoing Story: Families and Researchers Come Together to Develop the First Huntingtin Lowering Therapy” and was definitely one of the best sessions that I have ever attended! The panel included clinicians, researchers, representatives from IONIS, as well as an HD family member. It was presented as a timeline; from the testing of huntingtin-lowering drugs in animals, to the first trial in humans, and its impact on HD families. It was incredibly inspiring and although there is still much progress to be made, it provided much hope for the future! The rest of the day consisted of break-out sessions. I attended “Relationships and HD: From Perspective of Person with HD”, as well as “Relationships and HD from the Unaffected Partner Perspective”. It was interesting to hear the perspectives of the unaffected partner which included parents, friends, and partners of individuals with HD. The day ended with the HDSA awards dinner and gala.
I believe there are very few disease communities that have the opportunity to interact with the scientific community. To witness how incredibly dedicated these scientists are with regards to finding a treatment for HD gives me so much hope for the future. It is clear – perhaps even more so when Dr. Wild sheds a tear, that they are in it with us. It is not just science, but a genuine commitment to help those who are impacted by this terrible disease. I could not wait to return home to my family to tell them about all of the exciting things that are happening. We don’t talk about HD much, but the incredible dedication of the scientists, clinicians, and the HD community is what inspires my family to remain optimistic and to never lose hope!
Thank you again for this opportunity,