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HSG Scholarship Winners Receive Funding to Attend Premier Huntington’s Disease Conference

The Huntington Study Group (HSG) announces the 2018 CME4HD Online scholarship winners who have been awarded funding to attend its renowned annual meeting, HSG 2018: Unlocking HD.

Maryluz Camargo Mendoza, Ph.D

Addie Patterson, D.O

Maryluz Camargo Mendoza, Ph.D, associate professor at the National University of Colombia, Bogota, has received a scholarship for referring 49 people who successfully completed five CME4HD Online modules. Addie Patterson, D.O., associate professor at the University of Gainesville won the random drawing of 133 participants who completed five modules successfully. Both scholarship winners receive airfare, hotel and a travel stipend to attend the conference, held at ZaZa Hotel in Houston in November.

CME4HD Online is a continuing medical education program designed to teach healthcare providers how to care for and manage individuals with Huntington disease (HD). Participants gain the knowledge, tools,and resources needed to provide quality care to families impacted by HD, while learning from worldwide HD experts who teach the course. Topics and discussion include symptoms and diagnosis, HD treatments, ethical dilemmas in genetic testing, strategies for disease management, translation of complex clinical information for families and the role of ancillary services in the management of HD.

The CME4HD referral program encourages sharing and completion of the program modules to help educate medical professionals about Huntington’s Disease in order to help patients receive better care between sub-specialist appointments.

CME4HD Online program was first shared at HSG’s annual event and is now available online free of charge. The program was planned and implemented by HSG in partnership with the North American Center for Continuing Education, LLC (NACCME). This program was made possible, in part, by an independent educational grant from TEVA Pharmaceuticals.

The Huntington Study Group was formed in 1993 and is the world’s first HD cooperative therapeutic research organization. Twenty five years later, HSG is a world leader in facilitating high quality clinical research trials and studies that work toward finding effective treatments for HD. HSG has the first and largest HD clinical research network of more than 400 active and compassionate investigators, coordinators, scientists and HD experts at more than 120 credentialed research sites around the globe. HSG members are world experts in caring for individuals and families impacted by Huntington disease. Visit https://huntingtonstudygroup.org/ for more information.

Huntington Study Group Welcomes New Leadership May 1

The Huntington Study Group (HSG) is pleased to announce that Andrew Feigin, MD, and Elise Kayson, MS, ANP, have been elected as the chair and co-chair, respectively, of HSG, a world-wide network of Huntington disease (HD) researchers. Both Feigin and Kayson have dedicated their careers to the clinical care of patients and families and research in HD.

Feigin and Kayson will 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. They were democratically elected by HSG’s world-wide membership of more than 500 investigators, coordinators, and other researchers and care providers.

Feigin, a Professor of Neurology at NYU Langone Health and co-director of the Marlene and Paolo Fresco Institute for Parkinson’s and Movement Disorders, has been involved in the care of HD patients and research since his participation in the Venezuela Collaborative Research Group, which isolated the HD gene 25 years ago. Kayson, Director of Clinical and Strategic Initiatives at the University of Rochester’s Center for Health + Technology (CHeT), has been involved in the care of HD patients and research since the inception of the HSG and was one of the founders of the organization.

Feigin’s independent research has focused on the development of novel imaging biomarkers that could be used as outcome measures for HD clinical trials. He has served in many HSG leadership positions over the past 20 years, including as a member of the Executive Committee, chair of the Program Committee for the HD Clinical Research Symposium for five years, and currently chairs the Clinical Research Advisory Committee. Feigin is the principal investigator (PI) of the SIGNAL trial and the co-PI of LEGATO-HD, and has served as a site PI on numerous other HD trials. “I am honored and excited to serve as the Chair of this amazing organization as the most exciting new potential therapies for HD are now entering human trials,” Feigin said.

Prior to leading CHeT’s Clinical and Strategic Initiatives, Kayson was the Director of Project Management for the Clinical Trials Coordination Center (CTCC) at the University of Rochester and previously worked in industry. In addition, Kayson’s long involvement in all aspects of more than 50 clinical trials and the FDA approval of the only two drugs for HD gives her a deep understanding of clinical trial design, organization and conduct, and insights into and appreciation of HD clinical trials from the perspective of study participants to coordinators, investigators, CRO functions, and sponsors. She has served in many leadership positions in HSG, including as a member of the Executive Committee, co-chair of the HSG Credentials Committee, and co-chair of the HSG Educational Committee. “It is exciting to be part of the momentum of research in HD. I am honored to serve as the HSG Co-Chair and look forward to reaching the goal of finding treatments that make a difference for our patients and families,” said Kayson.

HSG appreciates all the candidates who ran for these positions and salutes their enthusiasm and commitment to the entire election process. In addition, we thank each of our members who attended the webinars, viewed the webpages, and took the time to cast votes 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 pursue their vision of partnerships, innovation and education to bring an exciting future to HSG.

New HD Insights Is Out (Vol. 19)

 

The new issue of HD Insights (Vol. 19) is out. Click here to read the latest news in HD research.

In this issue:

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.

Appointment:
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

EMAIL: bleavitt@cmmt.ubc.ca

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.

Sincerely,

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 info@hsglimited.org.

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: heather.hare@hsglimited.org 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.

Sincerely,

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.

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