News

HSG Announces Launch of CME4HD 2019 – Accredited Online Education Platform

Beginning February 1, 2019, the Huntington Study Group (HSG) will offer the latest update to its popular online learning program, CME4HD. Once again, CME4HD courses will be offered free of charge thanks in part to an educational grant from Teva Pharmaceuticals.

CME4HD originally began as in-person training on Huntington’s disease (HD) at the HSG’s annual meeting, before launching in 2018 in an online, self-paced format. Learners can earn up to 3.25 total CME, CNE or IPCE credits by completing all courses in the program. Interested learners can register for a user account on the HSG’s learning platform, and learn more about the CME4HD program on our website: https://huntingtonstudygroup.org/cme4hd-online/

The CME4HD program presents evidence driven data and examples about Huntington’s disease by stage and disease burden. CME4HD 2019 content is designed for healthcare professionals, including social workers, nurses, and neurologists, who provide care to patients with HD. Family members serving as caregivers will also find the content extremely valuable.The HSG is extremely grateful to Bridget Lyon and Jeff McDonald for allowing their documentary, The Inheritance, to be used as a case study and for these courses. The Inheritance honors the efforts of Bridget’s mother to strengthen public awareness of Huntington’s disease. She wanted people to know what it was and how it affected entire families, generation after generation. All users that register for CME4HD 2019 will have access to the full-length documentary.

CME4HD has been planned and implemented by North American Center for Continuing Medical Education, LLC (NACCME) and the Huntington Study group. NACCME is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC) to provide continuing education for the healthcare team.

HSG Announces Location for 2019 Annual Meeting

The Huntington Study Group announces Sacramento, California as the location for this year’s annual meeting: HSG 2019. Dr. Vicki Wheelock and her team at our UC Davis site will serve as the HSG Host Site for what has long been the organization’s hallmark event, bringing together leaders in HD research, the HD community, sponsors, and families to share their knowledge.

HSG 2019 general sessions will be held on November 7th and 8th, with the event concluding on Saturday, November 9th at the Hyatt Regency. This year’s meeting will continue to feature the signature Family Day session on Saturday for families members to get in-person insights and helpful advice for leaders in the field. Saturday will also offer the HSG’s accredited provider training, CME4HD, in-person.

Additional information regarding registration and agenda will be provided as those details become available.

HD Insights – Autumn Issue

The latest issue, Volume 20 of HD Insights has arrived and available online for viewing/downloading. This first edition of HD Insights version 2.0 includes several visual, style and content updates from editor Daniel Claassen, MD and deputy editor Sara LaJeunesse.

In this issue:

Dr. Nicolò Zarotti Named Recipient of the Peter Como Scholarship

The Huntington Study Group (HSG) is pleased to announce the that Dr. Nicolò Zarotti has been named recipient of the Peter Como Scholarship to attend the renowned annual meeting.

Dr. Zarotti obtained his Bachelor’s and Master’s degree in Psychology in Italy, and later joined Lancaster University (UK), where he completed his PhD focused on emotional processing and communication in Huntington disease (HD). Dr. Zarotti is currently part of a team collaborating with the British Psychological Society to produce new guidance on psychological approaches to the understanding and treatment of psychological difficulties in people with motor neurodegenerative conditions such as HD.

The Peter Como Scholarship, named in memory of one of HSG’s founders and biggest supporters, is awarded annually for a professional in the mental health field to attend HSG 2018: Unlocking HD. The Como Scholarship includes two nights’ lodging, travel funding, and a modest stipend.

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.

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:

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.

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