Career Opportunity: Clinical Fellowship in Huntington Disease Research at UBC

A funded Clinical Research Fellowship is available for a medical graduate with an interest in neurology, medical genetics, or psychiatry to work under the direction of Dr. Blair R. Leavitt at the Centre for Huntington Disease, based in the Department of Medical Genetics and the Division of Neurology, Department of Medicine at the University of British Columbia (UBC) in Vancouver, Canada.

The work will be in the field of Huntington’s disease, which is an inherited neurodegenerative disorder. The Fellow will participate in a number of on-going and up-coming experimental therapeutic trials and clinical translational projects, and this post is suitable for those seeking a career in HD clinical care, clinical neuroscience, and drug development. The working environment is collective and multidisciplinary. Enthusiasm, ability to be self-organised, an enquiring mind, vision and good clinical skills will all be necessary. The candidate will need to have good computer skills and be able to pick up mathematical statistical concepts.

The Clinical Research Fellow will be closely involved with the Centre for Huntington Disease at UBC under the clinical supervision of Dr. Blair R. Leavitt. This is an award-winning clinic that cares for patients and families affected by Huntington’s disease from premanifest gene carriers through to patients with advanced disease. Dr. Blair R. Leavitt is one of two Consultant Neurologists at the clinic other current staff include two Consultant Psychiatrists, a Consultant Clinical Geneticist, a Genetic Counsellor, two Clinical Trial Coordinators, a Clinic Administrator, and a Social Worker supported by the Huntington Society of Canada. This Clinic receives referrals from all over the province of British Columbia, the Yukon, and Pacific North-Western U.S. and is one of the largest HD clinics in North America, caring for approximately 750 HD patients and many more at risk of the disease.

Click here to read the full job description.

The post is funded for one year in the first instance, and renewable on an annual basis (subject to successful performance review) for a total of two years. The post-holder will be subject to a nine-month probationary period. SALARY RANGE: up to $100,000 per annum. Annual Leave: 14 days per annum.

Applications (1 copy of CV and the names of 3 references) should be sent to:

Blair R. Leavitt MDCM, FRCPC (Neurology)
Professor, Department of Medical Genetics, and
Division of Neurology, Department of Medicine (Associate)
Director of Research, Centre for Huntington Disease
Scientist, The Centre for Molecular Medicine and Therapeutics
Child and Family Research Institute, BC Children’s Hospital
The University of British Columbia
950 West 28th Avenue, Rm. 2020


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

2018 HSG Election

Dear HSG Members,

Below is the content of an email that all HSG members should have received today. If you didn’t receive it, please check your spam folder and mark it a “safe sender” so you receive future important communications from HSG. If you have any trouble logging in, please contact HSG at +1 800-487-7671 or

Huntington Study Group is honored to announce the Chair and Co-Chair candidates for the 2018 HSG election. It’s our 25th anniversary, and the candidates represent the best of what our growing and active membership has to offer. They are world experts in Huntington disease care and research. They are leaders and collaborators. They are the future of HSG.

Voting begins Jan. 26.

Each nominated pair was approved by the nominating committee and has submitted a Joint Vision Statement and CVs for voter consideration. To read them, click on the candidate pairs below (Chair/Co-Chair):

In addition, the candidate pairs will present their vision and take questions from the membership during webinar forums at the times listed below:

  • 9 am ET 1/15/18: Webinar Forum with Andrew Feigin and Elise Kayson (Click here for details)
  • 12 noon ET 1/15/18: Webinar Forum with Claudia Testa and Samuel Frank (Click here for details.)
  • 9 am ET 1/16/18: Webinar Forum with Blair Leavitt and Christopher Ross (Click here for details.)
  • 12 noon ET 1/17/18: Webinar Forum with Blair Leavitt and Christopher Ross (Click here for details.)
  • 9 am ET 1/18/18: Webinar Forum with Ralf Reilmann and Bonnie Hennig-Trestman (Click here for details.)
  • 9 am ET 1/19/18: Webinar Forum with Claudia Testa and Samuel Frank (Click here for details.)
  • 12 noon ET 1/19/18: Webinar Forum with Andrew Feigin and Elise Kayson (Click here for details.)
  • 9 am ET 1/22/17: Webinar Forum with Martha Nance and Jody Corey-Bloom (Click here for details.)
  • 12 noon ET 1/22/18: Webinar Forum with Ralf Reilmann and Bonnie Hennig-Trestman (Click here for details.)
  • 1 pm ET 1/23/18: Webinar Forum with Martha Nance and Jody Corey-Bloom (Click here for details.)

If you’d like to submit your questions for candidates ahead of time, please contact Heather Hare: or +1 (585) 242-0277. Your questions can be asked of all candidates or specific candidates, on your behalf or anonymously.

PLEASE NOTE: You may only vote once and cannot change your vote once it is submitted.

Important Dates:

  • 12:01 am 1/26/18: Voting begins
  • 12:01 pm 2/9/18: Voting ends

Elections for the Chair and Co-Chair take place every four years by electronic ballot, with the majority of total votes received from HSG members required for election. The Chair and co-Chair team will be entitled to compensation for their time and effort.

  • Click here to read the Chair job description.
  • Click here to read the Co-Chair job description.

If no pair of candidates earns a majority of the votes in the election, HSG will hold a run off election in February between the two pairs of candidates who received the most number of votes.

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.

Loss of our friend, Dr. Kimberly Quaid de Cordon

We heard today that Kimberly Quaid de Cordon, PhD, died in a tragic accident, and we now are mourning the loss of our friend and long time HSG colleague. Kim was a professor of Medical and Molecular Genetics and a Faculty Investigator for the Center for Bioethics at the Indiana University School of Medicine, and a genetic counsellor, and bioethicist who contributed influential works in areas of genetic testing, informed consent, research integrity, gender equity, and more. She was a highly sought after collaborator and committee member within the HD research community and more broadly with regard to her work in Alzheimer’s and other neurodegenerative diseases and cancer. Kim was the director of the HDSA Center of Excellence in Indianapolis, Co-Investigator of the HD Research Roster, and contributed extensively in her professional life. Kim lived life with energy, joy and humour, and a strong sense of justice. She leaves behind her beloved husband and two daughters. She will be sorely missed as a friend and colleague.


Julie Stout, PhD, Treasurer, Huntington Study Group

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.

We need you!

HSG currently has two surveys in which your input is invaluable. We know there are a lot of surveys going around and you have limited time, so we tried hard to make these as brief as possible.

  1. HD Care Improvement Project: Funded by the Griffin Foundation, the project aims to improve care and access to care but needs your input to do so. 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 the brief survey below. 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! (The survey represents a collaboration among 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.) Click here to take the brief survey.
  2. HD-Health Index: Funded by NJ Cure, this University of Rochester project aims to create a better quality of life outcome measure for research trials. If you have firsthand experience with the disease, either as someone with HD or as a caretaker, and are interested in helping research efforts, we want your opinion. The University of Rochester is administering a half-hour online survey that will ask you to rate the impact various common symptoms of the disease have on your life. $30 compensation for participation. For more information and to view the consent form, click here.

We know you’re bombarded with surveys, but we hope you’ll consider doing both of these.

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.

World Experts in HD to Convene in Nashville

HSG 2016 with dateTraining 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 for presentation of new research findings and treatments to the worldwide community. The event, which is expected to draw over 300 attendees, is being held at the Gaylord Opryland Resort and Conference Center.

Among the highlights of the event are:

  • UHDRS Symposium, which focuses on a proposed modified Unified Huntington Disease Rating Scale and its use in clinical trials as an efficacy endpoint.
  • HD Innovators Forum, which includes presentations from leading HD industry partners working on developing new HD treatments.
  • CME4HD, a day-long, in-person continuing medical education course for healthcare providers hosted by HSG and Vanderbilt University School of Medicine. The course will teach providers how to care for and manage individuals with HD. Participants will have the opportunity to earn 8.75 AMA PRA Category 1 CME CreditsTM.
  • Keynote speech by Dr. Bob Beall, former CEO of the Cystic Fibrosis Foundation, who will talk about how CFF developed its care and research models in a non-profit setting through partnering with families, care providers, researchers, and biotech.
  • HD Research Symposium, highly acclaimed research presentations drawing worldwide recognition.
  • HD Family Education Day, designed for the local HD community and family members. The day starts with hearing about the latest in HD research, followed by interactive workshops and breakout sessions.

Registration costs vary on participation, but HD Family Education Day is free for HD community members. Please visit for more information and to register.

For more information:
+1 800-487-7671 or

# # #

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.

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