News

Welcome new staff member, members of leadership team

July 21st, 2017 Heather Hare The Huntington Study Group is pleased to announce a new staff member and new members of the leadership team. Anne Van Dusen, CHC, is HSG’s new Director of Education & Special Programs, Sarah Noonberg, MD, PhD, replaces Mike Poole, MD, on the executive committee, and Christopher Beck, PhD, replaces David Oakes, PhD, as HSG’s Director
+ Read More

Overnight Switch from Tetrabenazine to Deutetrabenazine Safe, Trial Shows

July 11th, 2017 Heather Hare JAMA Neurology paper published today from ARC-HD Trial People with Huntington disease-associated chorea can safely convert overnight from tetrabenazine to deutetrabenazine (brand name: Austedo), according to the results of the Alternatives for Reducing Chorea in Huntington Disease (ARC-HD) trial published yesterday in JAMA Neurology. The Phase III open-label, single-arm switch cohort of the trial was
+ Read More

FDA Approves Second Drug for Huntington Disease Symptom

April 3rd, 2017 Heather Hare The U.S. Food and Drug Administration (FDA) today approved SD-809 (deutetrabenazine), the second drug approved for use in the United States to treat chorea in Huntington disease (HD), a rare, inherited neurodegenerative disorder. The approval was based on positive results from the First-HD study, a Phase 3 clinical trial which was led by the Huntington
+ Read More

Seeking Survey Participants

April 3rd, 2017 Heather Hare If you are someone with HD, or a family member, friend or caregiver of a person living with HD, please take a moment to complete this brief survey. The survey represents a collaboration between the Griffin Foundation, the Huntington Study Group (HSG) and the Huntington’s Disease Society of America (HDSA) in partnership with a broad
+ Read More
Click to sign up for updates on HSG trials

Help4HD Blog Radio features I am the DIFFERENCE campaign

March 30th, 2017 Heather Hare Help4HD gave the Huntington Study Group the opportunity on its radio show to update the community on our many current projects, including the I am the DIFFERENCE campaign. Katrina Hamel, VP of Help4HD, hosted the show with guests Ann Nelson, an HD community member and participant in the campaign, and Heather Hare, HSG’s director of
+ Read More

Job Opportunity: Deputy Editor, HD Insights

February 3rd, 2017 Heather Hare Job description: If you are passionate about HD research and want to reach nearly 3,000 HD researchers and clinicians around the world, consider joining our team as the Deputy Editor of HD Insights. Oversee the creation of 3-4 editions per year of HD Insights. Responsible for soliciting, editing, and coordinating review and layout of each
+ Read More

World Experts in HD to Convene in Nashville

September 6th, 2016 Heather Hare Training opportunities, family education available at HSG 2016 The Huntington Study Group (HSG), an international, non-profit network of more than 400 researchers and clinicians dedicated to seeking treatments that make a difference for Huntington disease (HD), is hosting its annual forum, HSG 2016: Discovering Our Future, Nov. 2-5 in Nashville for training and education and
+ Read More

Registration for HSG 2016 is now open

August 16th, 2016 Heather Hare Registration for HSG 2016: Discovering Our Future is now open. The annual event will take place Nov. 3 to 5 with a special symposium about using a modified UHDRS for clinical trials on Nov. 2. Please click here for information about registration, including the funded list. Registration is working a little bit differently this year,
+ Read More

JAMA publishes results of First-HD trial

August 3rd, 2016 Heather Hare In case you missed the news last month, the Journal of the American Medical Association (JAMA) published the results from First-HD, an HSG trial run by co-PIs Dr. Samuel Frank and Dr. Claudia Testa at 34 HSG sites around the country. The JAMA abstract is available here (the paper is available with a subscription). HSG’s announcement
+ Read More