Founder’s Day, Suicide Prevention, & My VIBE Podcast

HDSA Founder’s Day of Giving  

55 Years ago, Marjorie Guthrie sought out volunteers from across the country and created the first network of support for the HD community. Each year on September 18th, HDSA honors our founder and the five volunteers who stood shoulder to shoulder with her to create what is now the Huntington’s Disease Society of America. Join us in honoring Marjorie’s vision to “do the work that must be done” by donating today in support of Marjorie’s strength and inspiration! 

Your contribution will help HDSA carry on its mission work, including our activities supporting and growing the field of HD Research, to improve the lives of everyone affected by HD and their families. Any amount makes a difference, and better yet—the Woody and Marjorie Guthrie family is generously matching all donations made up to $15,000, meaning your gift will have double the impact for families living with HD. Click here to learn more about how you can show pride and gratitude for the impact HDSA has on each of us, in our families and communities! 

National Suicide Prevention Week  

The complex nature of Huntington’s disease brings unique experiences for those it affects. While onset may look different amongst HD-positive individuals, mental health and psychiatric symptoms pose ongoing challenges for the community. Research shows that there is an elevated risk of suicide in the HD community compared to the general population. Risk factors are varied, as are the lived experiences of people affected by HD. Something we do know is that talking to someone you worry is feeling suicidal or who has felt suicidal in the past does not increase their risk of suicide. In fact, it helps that person who is struggling feel less alone, more seen, and creates opportunities to help. 

This week is National Suicide Prevention Week, September 10-16. Know that you are not alone, and if you are struggling with severe depression, thoughts of suicide or have lost someone to suicide, there are resources that can help. If you or someone you know is struggling, click here to find a social worker near you, or access HDSA’s free TeleHealth counseling services here. To learn more about how suicide affects the HD community, watch HDSA’s episode of Here’s the Deal on suicide, view additional suicide prevention resources on HDSA’s website, or visit suicidepreventionlifeline.org. And, know that at any time, you can dial 9-8-8 to contact the national suicide and crisis lifeline and speak to someone who can provide support.  

My VIBE Podcast: PTC Therapeutics highlights HD 

PTC therapeutics hosts the Insightful Moments My VIBE podcast, a show that “shares experiences straight from the Voices of Inspirational, Brave and Empowering patients and families.” My VIBE highlights perspectives of people affected by rare diseases, and season two kicked off with two episodes with special guests from the HD community. These were recorded at HDSA’s 2023 Convention in New Orleans this June. Tune in here to listen to guests share their HD story in their own words .