VOLUME 15, ISSUE 11
RESEARCH NEWS
Huntington Study Group (HSG) 2020 Annual Conference: HD in Focus – Day 1
(HDBuzz.net: Oct. 30, 2020)
The Huntington Study Group (HSG) is a clinical research network focused exclusively on HD. Yesterday the HSG annual conference began with a schedule jam-packed with virtual talks from researchers, clinicians and different companies who are all working towards finding new medicines for HD. The day encompassed many interesting presentations which covered a lot of the recent developments in HD drug discovery.
Huntington Study Group (HSG) 2020 Annual Conference: HD in Focus – Day 2
(HDBuzz.net: Nov. 1, 2020)
The second day of the HSG conference was another busy day of presentations from HD researchers and clinicians.
The day kicked off with a talk from Vaccinex who gave us an overview of their work on the SIGNAL clinical trial. Unfortunately, pepinemab, the medicine tested in this trial, did not influence HD symptoms and the SIGNAL study did not meet its key clinical goals. The SIGNAL trial scientists suggested that perhaps with different patient groups or treatment regimens, pepinemab might still hold promise for treating HD, but that remains to be seen.
Treatment for Neurological Disorder Could be Repurposed for Huntington’s Disease
(HDBuzz.net: Oct. 22, 2020)
While developing a drug called branaplam for patients with SMA, the pharmaceutical company Novartis discovered that it could hold promise for people with HD. The FDA has granted a special status called Orphan Drug Designation to branaplam.
HSC News
HSC National Conference 2020 (2021) Cancelled
Given recent governmental announcements that a second wave of the virus is now in full swing and predictions regarding the longevity of COVID-19, HSC has made the decision to cancel the 2020 (2021) national conference completely. We will also defer planning for a future national conference given the uncertainly of how the pandemic will unfold over the next year or so. The organization is simply not in a position to commit to any mass in-person gatherings so far in advance.
HSC Remains Firm in Discouraging Public Gatherings Within the HD Community
As each province across Canada braces itself for a spike in COVID-19, we at HSC would like to ensure that our volunteers and supporters remain as safe as can be. With respect to chapter meetings and other social gatherings, we reiterate that coming together virtually where possible continues to be the best option. It is also a priority to ensure that we protect ourselves and our neighbours from the spread of COVID-19.
Roche/HSC Burden of Illness Study
The Huntington Society of Canada (HSC) is working in partnership with Hoffmann-La Roche Ltd. to better understand Huntington disease and its impact in Canada. You are being invited to participate in this research study because you are either a person living with Huntington disease or the caregiver of a person diagnosed with Huntington disease (HD). If you are interested in participating, please click here for more information and a link to the study.
HSC Introduces FlipGive: A New Way to Give Back!
The Huntington Society of Canada (HSC) is excited to partner with FlipGive: a fundraising website/app that earns funds for HSC for the things you’re already buying. “Teams” earn cash back by buying the things they need to get anyway and are paid whenever they shop, dine out, book hotels or activities. With favourites like Walmart, Esso™/Mobil™, Hotels.com, Nike, Under Armour (and lots more), all you have to do is continue to buy the things you need. You can earn funds for things like groceries, hotel stays, eating out, gas, etc. Now, when you purchase some of your favourite brands, a percentage of the cost of the item will come to HSC, automatically!
HSC 2020 Clinical Fellowship Now Open for Applications
The Huntington Society of Canada (HSC) is pleased to offer the Clinical Fellowship program (Fellowship) as a strategic initiative to encourage promising young clinicians to enter into clinical training in Huntington’s disease (HD). This fellowship of $80,000 will fund a one-year clinical training program. The purpose of this post-residency training is to create expertise in the diagnosis and management of HD.
RCD Shelley Thiele Moving On
Shelley Thiele joined the Huntington Society of Canada (HSC) in 2018 as the Resource Centre Director in Southern Alberta. During her 2 years with HSC, Shelley transitioned the Resource Centre to a home based office, grew the support groups for both carers and people living with HD, collaborated closely with both the genetics and movement disorders clinics and provided support, education and advocacy to the individuals and families affected by Huntington Disease (HD) in that region. Shelley has also been an integral part of the family services team serving as clinical back up during staff transitions and as one of the team representatives on the COVID 19 committee.
Shelley has accepted a full time role as a social worker in a long term care facility and her last day with HSC will be Nov. 30, 2020. Shelley will be greatly missed both by the HD community and the HSC team.
In her letter informing us of her decision, Shelley shared that “working for the HSC has been one of the highlights of (her) career, particularly being able to have supported the wonderful individuals and families in the HD community. It has been a privilege to have worked for the HSC.”
Please join HSC in wishing Shelley all the best on this new path!
The recruitment process will begin shortly. Please contact Angèle Bénard, national director of family services, with any questions: abenard@huntingtonsociety.ca.
COMMUNITY NEWS
Michael Hayden Receives Soroka Humanitarian Award
Dr. Michael Hayden, a Killam professor in the department of medical genetics and researcher at the Centre for Molecular Medicine and Therapeutics, is this year’s recipient of the David Dubinsky Humanitarian Award.
#TalkClinicalTrials: Jenna’s Experience
Jenna is a teacher, a mother of two young girls, and a part-time caregiver for her mother who lives with Huntington’s Disease (HD). She has supported the Huntington Society of Canada’s efforts to raise awareness by sharing her family’s HD story with the Canadian community and internationally. In our latest #TalkClinicalTrials blog, Jenna opens up about her family’s experience with clinical trials
COMMUNITY EVENTS/FUNDRAISERS – VIRTUAL
Virtual Runs with RaceHD
Join our National Running Team, RaceHD, for one of these amazing events! You don’t have to be an expert runner to join the team, everyone is welcome! There are multiple distances for each race so whether you’re a seasoned athlete or a novice to the running game, there’s something for everyone!
Making Your Event Virtual (or Partially Virtual)
As the world responds to COVID-19, charities are considering virtual fundraising as a way to meet organizational goals.
Here are some tips and considerations to move towards a virtual fundraiser. Our anonymous donor is still matching all donations until June 30, so be sure to take advantage!
HSC EVENTS
HSC’s BC Resource Centre Announces New Online Carer Support Group
(Open to Residents of British Columbia)
The Huntington Society of Canada (HSC) BC Resource Centre is very excited to announce the launch of a new online carer support group for BC and the Yukon.
2020-2021 Community Education Forum Seasonal Series
Generously Sponsored by Roche and Novartis
This year, HSC is pleased to offer three virtual Community Education Forums (CEFs), as part of a seasonal series.
With our CEFs, HSC provides a forum wherein patients and carers can meet to learn about the most recent updates in HD, network with other patients and perhaps most importantly, have the opportunity to have their questions answered by leading professionals who specialize in HD.
Our first CEF took place on May 30, 2020 and the second ran on Nov. 14, 2020.
The third will take place on Feb. 27, 2021. Join Clare Gibbons (Genetic Counselor at North York General Hospital in Toronto), as we learn about predictive and diagnostic genetic testing for Huntington disease, from basic science to making the decision to be tested. This session will also provide information about the genetic components of some current treatment trials.
HOW YOU CAN HELP
2020 Amaryllis Campaign
The Amaryllis is the signature flower of the Huntington Society of Canada. We have Amaryllis volunteers across the country who sell bulb kits to help raise vital funds for our programs in research, services and education. Every year, around 20,000 Amaryllis bulbs bloom coast to coast, inspiring hope for a world free of Huntington disease (HD). Since 1985, HSC’s dedicated volunteers have raised well over $5 million in support of HD.
Help us reach our goal of selling 25,000 Amaryllis bulbs this year and inspire hope throughout the HD community. To place your order visit www.inspirehope.ca, call 1-800-998-7398 or email amaryllis@huntingtonsociety.ca
Champion of Hope
By joining our Champions of Hope monthly giving program, you support individuals and families affected by Huntington disease every single day.
Our Champions of Hope provide a vital and vibrant support network, and your gifts go to work in your community and across Canada.
To become a monthly donor click here.