HDSA Centers of Excellence provide comprehensive multidisciplinary clinical services to families affected by HD, including neurology, psychology, genetic counseling/testing, social services, ancillary therapies (OT, PT, and Speech) and HD clinical trials. The goal of the HDSA Center of Excellence program is to increase access to the best possible clinical care and services for persons affected by HD and their families through a geographically diverse network of medical and social services. Click here to learn more about the program and complete the online Letter of Intent.
HDBuzz on trial of CRISPR-based drug for TTR amyloidosis
More than a decade ago, CRISPR gene editing surfaced as an experimental technique to explore genetics, and has held promise as a future route for correcting genetic diseases. However, when researchers go about editing DNA, there are many concerns around safety, efficacy, and ethics that must be explored. Recently, a first for CRISPR gene editing was announced: the first successful safety trial of a CRISPR-based therapy to try and correct a human genetic disease. The disorder is called TTR amyloidosis, and it often affects the liver. Although this news is unrelated to HD, and there are many steps needed before such a drug could come to market, it’s exciting because it could have implications for other genetic diseases. HDBuzz covers the news in their latest article.
The latest blog post from HD community and research advocate Gene Veritas also focuses on CRISPR, reviewing Walter Isaacson’s latest book about gene editing and Nobel Laureate Jennifer Doudna. He also discusses CRISPR’s potential for the treatment of HD and why caution is needed when exploring gene editing in brain disease.
HD Insights Podcast with Seth Rotberg
On the most recent episode of the HD Insights Podcast hosted by the Huntington Study Group, HD advocate, speaker, and community leader Seth Rotberg joined Kevin Gregory for a conversation about his HD journey. Seth spoke about his family history, learning his genetic status, and how those experiences have informed his involvement as a pharmaceutical industry advocate and nonprofit leader at “Our Odyssey.” To hear more about Seth’s call for urgency in search of HD treatment options and his passion for creating connection in the rare disease community, listen to the full episode here, and check out Seth’s personal blog here.
HDSA Person of the Year Talks Advocacy with KTNV Las Vegas
Yvonne Sweeten, HDSA’s 2021 Person of the Year, joined Micah Manalo for an interview with the Las Vegas morning blend to discuss HD and her activism in the community. Yvonne educated viewers about the disease, shared her hope for treatments to come, and told of her involvement with the Las Vegas chapter of HDSA. She also highlighted her research advocacy with HD-COPE, a program led by HDSA and the Huntington Society of Canada, which amplifies global patient voices like Yvonne’s to ensure that scientists and pharmaceutical companies incorporate HD community input into drug development and clinical trials. Congratulations, Yvonne!