Help4HD Hits a Home Run With Annual Huntington’s Disease Symposium
The event united members of the HD community, pharmaceutical companies, and health experts
Help4HD is a nonprofit organization with a mission to educate the world about Huntington’s disease (HD) and juvenile Huntington’s disease. Its aim is to serve our community and provide information, education, and resources.
Help4HD hosted its annual family symposium in Nashville, Tennessee, October 7-8, and it was a major success. It was the first in-person Help4HD event I’d ever attended, as the events have been virtual for the past few years.
I’ve been attending HD conferences and conventions for the past 25 years, and I have to say, this event was 24 hours of pure enjoyment. The Help4HD team, led by Katie Jackson and Katrina Hamel, did a spectacular job. There were multiple activities for people living with HD, young adults, kids living with juvenile HD, and the children of parents who were attending.
Help4HD partnered with the Huntington’s Disease Society of America (HDSA) and the HDSA Center of Excellence at Vanderbilt University Medical Center. It was great to see so many sponsoring companies and vendors in attendance, including Teva Pharmaceuticals, Neurocrine Biosciences, Sage Therapeutics, UniQure, Wave Life Sciences, Prilenia Therapeutics, HD Genetics, the Huntington’s Disease Youth Organization, and PicnicHealth, among others. These are all companies that, with their products and services, have an interest in helping the HD community.
I was impressed with the speaker lineup, which included some of the top minds in Huntington’s disease clinical care and research. Some key physicians who presented were Martha Nance, Erin Furr-Stimming, Victor Sung, Karen Anderson, Mary Edmondson, and the entire multidisciplinary team from Vanderbilt’s HDSA Center of Excellence, led by Daniel Claassen. They covered important topics like HD diagnosis, genetic testing, symptoms, approved treatments, clinical trial updates, and more.
Coming together
The presentations were great, but I always feel the most positive impact at events like this is due to the openness of the speakers and their willingness to stick around to speak directly with families who have specific questions or needs.
I’ve mentioned a lot of the great aspects of the symposium, but the best was seeing old friends, making new ones, and experiencing the positive vibe among attendees throughout the weekend. I attended as a speaker in the youth area and with my HD Genetics hat on, working our table and talking to people about genetic testing.
I brought my wife and two kids, making it the first HD event we’ve attended as a family. Meeting many people in person for the first time and hearing their HD stories is something I always enjoy.
Another major announcement from the meeting was that Help4HD was selected by the U.S. Food and Drug Administration to host a Patient Listening Session focused on people living with juvenile HD. It will be a similar format to the listening session I was honored to help lead this summer for those who are pre-symptomatic, which I wrote about in previous columns. The effort by the Help4HD team is truly putting juvenile HD on the map.
These in-person events are no easy task to organize and host. I want to give major props to the Help4HD team for putting the event together in what I felt was a flawless manner. If you’ve never attended a Help4HD event, I encourage you to check out their website and stay tuned for 2023 events in the Midwest and their big 10-year anniversary event next fall in San Diego, California.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
About the Author
Comments