The Huntington’s Disease Society of America (HDSA) is the foremost nonprofit organization devoted to improving the lives or Huntington’s disease (HD) patients, in addition to the countless others affected by the rare condition.
It was incepted in 1967 by Marjorie Guthrie, the widow of folk musician Woody, who dedicated the late stages of her life to finding the silent killer that took her husband at the age of 55. She met with volunteers after placing an ad in a New York City newspaper, and started a global movement to change the lives of HD patients and their families.
In this video, Louise Vetter, the President and CEO of the HDSA and George Yohrling, PhD, the organization’s Senior Director, Mission and Scientific Affairs discuss the creation of the organization, what motivates them, and why their work is so important.
Vetter: So, the Huntington’s Disease Society of America was formed almost 50 years ago by the widow of Woody Guthrie. Marjorie Guthrie saw her husband and the father of her children go through a long and debilitating battle with Huntington’s disease that he ultimately succumb to in 1967. From that lack of resources, she was inspired to get families together and do something, to create change, and a voice and resources for families who had nothing but each other. That’s really the culture that HDSA was built from – the idea of families helping families. To this day, we’re a very small-staffed team. Our strengths are our chapters, our affiliates, our volunteers and families around the country, who self-organize to fund social workers, to man support groups, and often facilitate them for their peers. It’s really the importance of families stepping up to fill a necessary void.
Yohrling: I tell people I love answering the phone because sometimes it’s rewarding, sometimes it’s upsetting, but, at the end of the day, it’s always motivating. No matter what, it’s motivating. It could be that “Hey, you’re doing a good job.” Sometimes, it’s “Hey, we need to do better in this one area.” I don’t take that the wrong way, I take it as a challenge to do better. I’m obsessed with trying to find and create more resources for HD families. They need more. They deserve more. That daily interaction, that face-to-face, or on the phone, or even e-mail, that I didn’t have as a bench scientist, that I have now is so incredibly motivating. It gets me going to work every day, and I’ll never forget who I’m working for.
Vetter: So, our mission to improve the lives of everybody affecting by Huntington’s disease is really tackled by community-wide collaboration of making sure we’re providing help resources, so access to clinicians, training clinicians, resources for financial planning, navigating the social security administration and advocating and raising their voices for so many personal and political issues that affect the barriers and access to care that they have. But then also, really engaging families in the cure side of things. So, it’s helping them understand the power of clinical trials, giving them the hope that comes with watching pharmaceutical and biotech progress, as we see new treatments make it into the clinic for study. That’s really inspiring to families, and we want to make sure that families are participating in the clinical studies that will get us answers so these drugs can be approved. We’re really just charting the course toward a cure, and that’s. a lot of the support and education and empowerment that we work on at HDSA.
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For more information about Huntington’s disease and the work of the Huntington’s Disease Society of America, please visit HDSA.org.