VOLUME 15, ISSUE 3
SPECIAL NOTICES
COVID-19: A Message from Our CEO
Bev Heim-Myers, CEO (Interim) of the Huntington Society of Canada, summarizes some of the things we are doing to keep you connected – and safe.
Novel Coronavirus (COVID-19) and Huntington Disease: What You Should Know
Since Huntington disease (HD) is a chronic disease, questions and concerns about the impact of COVID-19 is understandable. Check this link for more information.
Invitation to Participate in a Study about Huntington Disease
A collaborative partnership between the Huntington Society of Canada, The Ottawa Hospital, and Clinical Trials Ontario is conducting an online survey with Huntington Disease patients and family members about their attitudes towards health research and participation in clinical trials.
As you may know, development of new treatments for Huntington Disease involves a lot of clinical research, often including large-scale clinical trials that involve the participation of hundreds or thousands of patients. Rates of participation in these important studies has been declining for years, and we are trying to understand the range of factors that people consider when deciding whether or not to participate.
We are conducting an online survey of Huntington Disease patients and family members about this issue. Given your experience with Huntington Disease, we’d like to invite you to participate in this online survey. This survey will ask questions about your knowledge of clinical trials, as well as what you think are the most important barriers and drivers to participation in clinical trials. We estimate that the survey will take approximately 15-20 minutes to complete.
Thank you for considering our request. This link (cliquez ici pour le version française) will bring you to the participant informed consent form, which provides more details about the study.
If you are interested in participating, please click on the link below.
https://ktcanada.ohri.ca/hscsurvey/
If you have any questions, please don’t hesitate to contact Dr. Jamie Brehaut at 613-737-8899 ext. 73820 or via email at jbrehaut@ohri.ca. You can also contact the research coordinator, Kelly Carroll at 613-737-8899 ext. 73824 or via email at kecarroll@ohri.ca
HD RESEARCH
New Molecule Can Reverse the Huntington’s Disease Mutation in Lab Models
(HDBuzz.net: March 13, 2020)
A collaborative team of scientists from Canada and Japan have identified a small molecule which can change the CAG-repeat length in different lab models of Huntington’s disease.
HDBuzz Reports from the Annual Huntington’s Disease Therapeutics Conference in Palm Springs
(HDBuzz.Net: March 3, 2020)
Our new writers Rachel Harding and Sarah Hernandez report from the Huntington’s Disease Therapeutics Conference – the biggest annual gathering of HD researchers.
Screening the ENTIRE Genome for New Drug Targets for HD
(HDBuzz.Net: February 23, 2020)
A recently published study in the journal ‘Neuron’ has identified new potential therapeutic targets for the treatment of Huntington’s disease (HD). The work conducted by Professor Myriam Heiman and colleagues used cutting-edge genetic technologies and discovered several genes could modify HD progression in their models in the lab. Many of these genes have not been linked to HD before and could be exciting new targets for researchers to pursue when developing drugs and treatments for the HD patient community.
The Third Dimension: Using Minibrains to Understand Brain Development Changes in HD
(HDBuzz.Net: February 20, 2020)
The third dimension: using minibrains to understand brain development changes in HD.
Researchers Produce First Physiotherapy Guidance for Huntington’s Disease
(Cardiff.ac.uk: February 28, 2020)
Cardiff University researchers are part of a global consortium who have published the first clinical guidance for the management of Huntington’s disease through physiotherapy.
Huntington’s Disease-Causing DNA Repeat Mutations Reversed in the Lab
(News Release: Feb. 27, 2020)
In an international study published in the February 14 online edition of Nature Genetics, scientists from The Hospital for Sick Children (SickKids), Canada, along with research teams from Osaka University, Japan, reveal the ability to reverse this repeat mutation length in the brains of a mouse model with Huntington’s disease. The team discovered a compound that targets the unusual DNA structure and was shown to reverse repeat expansions with undetectable off-target effects.
HSC NEWS
May is HD Awareness Month!
We are gearing up for yet another wonderful May Awareness campaign – and we can’t wait to see what happens this year! Let’s make 2020 the biggest and best year so far! Since 2015, volunteers from across Canada have been working to illuminate various buildings, monuments and statues during the month of May to raise the visibility of HD and Juvenile Huntington disease (JHD).
Thanks to the enthusiasm of the HD community and many HD volunteers, “#LightItUp4HD 2019” saw a record number of participating sites, worldwide. In Canada, 55 sites participated in #LightItUp4HD, while another 114 international buildings, monuments and other structures lit up in blue for HD and/or purple for JHD. In 2019, an international total of 169 sites participated – nearly 50 more than in 2018.
Leading up to the month of May, volunteers all across the world are tirelessly canvasing and promoting the upcoming month of awareness in every way they can. They write letters and send emails to add countless buildings to our list of #LightItUp4HD sites (to be posted to the website in coming weeks).
Don’t miss a single post, see what everyone’s posting with our official hashtag #LightItUp4HD!
For Facebook posts, click here. For Twitter posts, click here.
We Have Moved!
The HSC national office has moved to Waterloo, ON. Now is a great time to update our mailing address in your records.
Our phone lines, email addresses and website all remain as they were. It’s business as usual!
Our new mailing address is:
20 Erb St. W.
Suite 801
Waterloo, ON N2L 1T2
Are you a supporter of the Huntington Society of Canada? Interested in getting more involved?
HSC is now accepting applications to its Board of Directors for vacancies beginning in 2020 and 2021. This national board includes 15 directors from across the country who combine enthusiasm for the work of the Society with expertise in one or more areas of business including law, governance, fundraising & development, finance, media/communications, strategic planning, science & research and human resources. If you, or someone you know, is interested, please let us know. There is a process that we follow, and expertise that we are looking for, but it starts with your interest. Forward your CV and Letter of Interest outlining your skills and experience to:
Huntington Society of Canada
20 Erb St. W., Suite 801
Waterloo, ON, N2L 1T2
Or email jgulka@huntingtonsociety.ca.
Attention: HSC Board
All nominations received by May 20, 2020 will be considered.
HSC EVENTS
Save the Date! HSC National Conference
We are looking forward to the next National Conference in 2020 in Niagara Falls, ON! Check back often as more details are confirmed and look for our snappy new conference logo on future communications!
HOW YOU CAN HELP
Champion of Hope
When you become a Champion of Hope monthly donor you contribute each and every day to finding a reliable treatment for Huntington disease. To learn more about how you can contribute every day, click here.