HDSA is excited to announce a new educational series that will begin TODAY, May 13th at 2PM ET, HDSA & Me. These virtual events for the HD community will talk through a range of topics, including social distancing and its effective caregivers, adaptive yoga practices, music, dance, and more. Today’s session will feature speaker Dr. Martha Nance to cover “Getting Started” in your HD journey. Register for free here.
Hope in the Pipeline: Gene Veritas Reflects on CHDI’s 16th Annual HD Therapeutics Conference
In a follow-up to previous posts about recent disappointments in HD research, in his April 25th blog post, Gene Veritas shared his causes for hope for the future of HD research. While Roche and Wave studies may have hit roadblocks, Gene briefs readers on ongoing clinical trials that seek to offer treatments and cures to those affected by HD. Additionally, in an April 28th post, Gene summarized his own thoughts on presentations from the 16th Annual CHDI conference that broke down preliminary results from Wave and Roche as well as other talks from pharmaceutical companies with therapeutics in the pipeline. Although disappointing, in his May 7th reflection on the conference and the recent ups and downs for the HD community, Gene discusses the upside: however disheartening these results may be, the data collected will offer new insights for development of future treatments and bring the community one step closer to treatments and cures for HD.
Gia Mannone talks HD with Nassau Community College
Social worker and Youth Services & Recruitment Chair for HDSA’s National Youth Alliance, Gia Mannone, shared her HD journey in a recent interview with Dr. Jeanine Cook-Garard and Gina Peter from Nassau Community College. In a discussion on the complexities of HD, Gia shared her story of growing up at-risk for HD, her mom’s difficult diagnosis, the challenges faced by her family and the HD community, and how these experiences informed her entry into social work and her position on the board of the National Youth Alliance. To listen to the discussion first-hand, access the recording here.
Researcher Spotlight: Saül Martinez-Horta
All the way from Barcelona, Spain, 2019 HDSA Human Biology Fellow, Saül Martinez-Horta, PhD, gave us the scoop on his entry into HD research, the highlights of his HDSA-funded research, life in Barcelona, and more. To read about Saül’s work and learn more about where he is today, check out his researcher spotlight article here.