HSG Leadership Election Results

Andrew Feigin, Chair-Elect

Elise Kayson, Co-Chair-Elect

On behalf of the HSG Nominating Committee, it is with great pleasure that we announce that Andrew Feigin and Elise Kayson have won the run-off election for the HSG Chair and Co-Chair positions. We thank all of the candidates who ran for these positions and salute their enthusiasm and commitment to the entire election process. In addition, we thank each of you who attended the webinars, viewed the webpages, and took the time to cast your vote for this important election. As HSG begins our 25th year of seeking treatments that make a difference, let’s join in congratulating our new leadership and wishing them the very best as they outline an exciting future.

Andy and Elise begin their four-year term as chair and co-chair May 1, 2018, succeeding Ray Dorsey and Blair Leavitt, who along with Julie Stout, Joni Steinman, and Shari Kinel, expertly led HSG through the last four years.


Anne Young

Chair, HSG Nominating Committee

Ionis and Roche announce promising news on the Ionis-HTTRx trial

Ionis and Roche announced Monday, Dec. 11, that the Phase 1/2a Ionis-HTTRx trial reported no significant safety issues among participants. In addition, cerebral spinal fluid collected from participants during the trial showed a dose-dependent reduction in mutant huntingtin proteins in the fluid.

For more information, read the HD Buzz article about the announcement. More details about this early phase trial is lower in the article.


Click here to read the Ionis press release.

Click here to read an FAQ from HDSA

Click here to read the Washington Posts‘s coverage.

Click here to read an informative Q&A with Ed Wild.

Welcome new staff member, members of leadership team

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 of Biostatistics/executive committee member.

“We are extremely fortunate to have Sarah, Chris, and Anne join our team,” said Ray Dorsey, MD, chair of HSG. “Sarah and Chris have a long-standing interest and record of service in HD. Anne brings much-needed expertise in training to help drive our educational efforts.”

Anne Van Dusen, CHC, Director of Education & Special Programs

Anne joined the HSG team in June of 2017 as the Director of Education & Special Programs. Anne is part of the Executive team and will develop and implement both educational and program plans that will sustain and help HSG to maintain its standing as a proven world leader in facilitating high quality clinical research trials and studies in Huntington Disease (HD). Anne holds a BS from the University of Binghamton School of Management and is certified in healthcare compliance by the Compliance Certification Board. Prior to joining HSG, Anne held several leadership roles in compliance, quality and finance, most recently at CCSI of Rochester, ACM Medical Laboratory and Lifetime Care Home Care and Hospice. Anne is passionate about trail running and is very active in the local running community. 



Christopher Beck, PhD, HSG Director of Biostatistics

Chris is an Associate Professor of Biostatistics and Orthopaedics at the University of Rochester Medical Center. As a member of several national and international collaborative groups conducting research in areas including Huntington disease, Parkinson disease, Batten disease, bone repair, rheumatoid arthritis, and cardiomyopathy, Chris has extensive experience and a great deal of expertise in the biostatistical aspects of basic and clinical research. He joined HSG in 2005 while serving as a biostatistican for the TREND-HD study, and he has continued in that role for a total of eight HSG studies. Chris is honored to become only the second Director of Biostatistics in the history of HSG.



Sarah Noonberg, MD, PhD, Executive Committee Member

Sarah is currently the Chief Medical Officer at Prothena, a biotechnology company focused on the discovery, development, and commercialization of novel immunotherapies for diseases involving protein misfolding. Prior to joining Prothena, she served as Group Vice President and Head of Global Clinical Development at BioMarin Pharmaceuticals Inc., where she was responsible for clinical development programs using gene therapies, oligonucleotides, and recombinant proteins to address a diverse range of neurodegenerative, neuromuscular, metabolic, and hematologic diseases. Earlier in her career she led clinical studies in Huntington disease in partnership with the Huntington Study Group, as well as clinical studies in Parkinson’s disease, Alzheimer’s disease, prostate cancer, and cystic fibrosis. Sarah earned her MD at the University of California, San Francisco, her PhD in Bioengineering at the University of California, Berkeley, and her BS at Dartmouth College. She is a board-certified internist and works part-time as a hospitalist physician treating a broad range of inpatient and critical care patients.

Overnight Switch from Tetrabenazine to Deutetrabenazine Safe, Trial Shows

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 led by the Huntington Study Group (HSG) and the University of Rochester’s Clinical Trials Coordination Center (CTCC) on behalf of Teva Pharmaceutical Industries Ltd.

Although the topline results of the trial have been released previously, the peer-reviewed publication about the switch arm of ARC-HD clinical trial is now published in a premier neurological medical journal.


“This trial provides more good news for our patients who need options for medication to control their chorea,” said Samuel Frank, MD, HSG’s principal investigator of First-HD and director of the HDSA Center of Excellence at Beth Israel Deaconess Medical Center in Boston. “We are grateful to the people who volunteered in this trial and their families who supported their participation.”

The ARC-HD trial enrolled 37 patients who were on a stable dose of tetrabenazine for 8 weeks or longer. Participants converted from tetrabenazine to deutetrabenazine at a dose that was half of their original total daily tetrabenazine dose. After one week, investigators began weekly dose adjustments, if needed, to achieve optimal chorea control. This study was focused on safety. In addition, Total Maximal Chorea Score and Total Motor Score were evaluated as efficacy endpoints.

In April, the U.S. Food and Drug Administration (FDA) approved deutetrabenazine, the second drug approved for use in the United States to treat chorea in HD. The approval was based on positive results from the First-HD study, a Phase 3 clinical trial which was also led by HSG and CTCC on behalf of Teva Pharmaceuticals. In the double-blind, placebo controlled trial, deutetrabenazine significantly decreased chorea. The results were published in JAMA, July 2016.

Deutetrabenazine is structurally related to tetrabenazine with deuterium atoms placed at key positions in the molecule, prolonging plasma half-life and reducing metabolic variability, without changing target pharmacology.

“The deuterium chemistry can provide effective chorea control with fewer daily doses and with lower peak doses, potentially improving medication tolerance. These are both big benefits for our patients,” said Claudia Testa, MD, PhD, HSG’s co-principal investigator for ARC-HD and director of the HDSA Center of Excellence at Virginia Commonwealth University.

“It’s gratifying to see the current progress in treatments for people with Huntington disease. In addition to being grateful to the research participants who are a major driver in that progress, we are grateful to the sites and site staff whose dedication to seeking treatments that make a difference is unparalleled,” Testa added.

Much of the work that led to the completion of the ARC-HD trial was carried out by HSG, a non-profit network of 400 Huntington disease experts from more than 100 medical centers throughout North America, Europe, Australia, New Zealand, and South America who are dedicated to seeking treatments that make a difference for people and families affected by the disease. For more information about the Huntington Study Group, visit

Scientific, technical, logistical, and analytical support for ARC-HD was provided by the University of Rochester Clinical Trials Coordination Center (CTCC). The Clinical Trials Coordination Center is part of the Center for Human Experimental Therapeutics (CHET) and is a unique academic-based organization with decades of experience working with industry, foundations, and governmental researchers in bringing new therapies to market for neurological disorders.  For more information about the Clinical Trials Coordination Center, visit

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Seeking Survey Participants

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 group of organizations. We would like to understand YOUR experience – YOUR journey – and YOUR knowledge to help us improve access to quality care for HD patients and families in the United States. Your feedback is invited and welcomed!

Click here to complete the survey.

Help4HD Blog Radio features I am the DIFFERENCE campaign

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 Communications & Outreach. Listen to the show by clicking here.

To learn more about HSG 2017: Elevating HD, click here.

To participate in the HD-HI survey mentioned on the show, click here.

Updates on the HDCIP survey are forthcoming.

Why participating in clinical trials is important to Katie

Katie MoserParticipating in Huntington’s disease research is important to Katie Moser. Katie, 34, is gene positive and showing no symptoms of HD. She has a full-time job, friends, and a house, but she still chooses to take the time to participate in the trials and studies she can. She’s even driven five hours from her home in Elizabethtown, PA, to Rochester, NY, to participate.

“It’s important,” Katie said. “We need research in order to advance science. Ultimately, the goal is to find the cure or treatments or something to help in the long run. And if I weren’t going to do it, I can’t expect other people to do it. And it’s what I can do. I’m not a scientist; I’m not a doctor, but I can go do my part while I’m physically able to do it.”

Katie’s maternal grandfather died from complications of HD. She is an occupational therapist who chose to work with patients in an inpatient Huntington’s disease unit, where she saw the impact of the disease. Still, she chose to find out whether she carried the mutation, although most at-risk young people don’t. She raises money for research and participates in trials, helping to find treatments and, someday, a cure.

Katie’s advocacy and outgoing personality caught the attention of Lundbeck, a pharmaceutical company that specializes in finding therapies for central nervous system disorders. Katie is now a manager of Advocacy and Patient Support in Lundbeck’s Movement Disorder Marketing department. She travels the country, connecting with HD families at conferences, walks and other events. Her background in OT and her family experience helps her connect in a way no one else can.

Katie knows each individual’s situation is unique and doesn’t pressure anyone into participating, especially when trials need gene-positive participants. Not everyone wants to know their status.

“I tell people where to find information on trials. I direct people to the sites like HD Buzz to get information about research that will be easier for them to understand. And then I share my experience participating in trials,” Katie said.

Katie has participated in at least four multi-center trials and studies, as well as several smaller studies that only required one visit. She has traveled to New York City, Connecticut and Rochester to participate. She’s currently in ENROLL-HD, which is an observational study and one that doesn’t require participants to know their gene status.

“It’s a little exhausting,” Katie admitted. But even when one of the trials she participated in didn’t produce positive results (coenzyme Q10), at least it told researchers something.

“You don’t want to be wasting time and money. It’s important to find out what’s going on.”

To find out about HSG trials as soon as they launch, sign up for our future contact database. The Huntington’s Disease Society of America’s HD Trial Finder is a great resource for finding all currently enrolling HD trials, as well as

To learn more about Katie’s experience learning her gene status, read the 2007 New York Times feature article, “The DNA Age: Facing Life with a Lethal Gene,” by Amy Harmon.

Job Opportunity: Deputy Editor, HD Insights

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 edition, as well as contributing original articles and ideas for the publication. Ideal candidates will have experience in academic writing, be familiar with Huntington disease research and have the flexibility to work remotely with individuals all over the world. Training and supervision will be provided remotely by the outgoing Deputy Editor and current Editor. Ideal start date is Q2 of 2017. Compensated position.

Please send CV and letter of interest to

Registration for HSG 2016 is now open

HSG 2016 with dateRegistration 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, so it’s important to read the instructions carefully.

Click here for more information about the event, including agendas for the meeting, CME4HD, and the UHDRS Symposium.

We’re looking forward to seeing you at HSG 2016 in Nashville! It’s been a big year for HD research and we have a lot of catching up to do.

JAMA publishes results of First-HD trial

FirstHD_Horizontal sm screen resIn 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 is available here.

Frank spoke with several medical reporters about the findings, including at Medscape, which published this piece about the findings.

Thank you to Frank, Testa, Elise Kayson, Jody Goldstein and Jacqueline Whaley and the rest of team at CTCC, our site investigators and coordinators, and especially to the trial participants and their caregivers.

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