VOLUME 15, ISSUE 4
SPECIAL NOTICES – COVID-19
HSC National Conference Postponed
Given the ongoing uncertainty that COVID-19 presents, especially economic impact to the Huntington Society of Canada (HSC) and our community, we have made the difficult decision to postpone our National Conference.
This year, we were all set to gather at the conference on November 13 and 14 in Niagara Falls, ON. Given our inability to predict potential restrictions we may face in November, we felt it would be best, instead, to meet in 2021 when we can fully celebrate our successes and each other.
Once we have confirmed the new 2021 date for the National Conference, you will find the dates here.
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.
What Does COVID-19 Mean for Families Affected by HD and HD Research?
(HDBuzz.net: April 6, 2020)
COVID-19 update: what does it mean for HD families, how does it impact HD research, and how has it changed the way science works?
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.
24 HOURS LEFT: 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
HSC NEWS
May is HD Awareness Month!
May is Huntington disease (HD) Awareness Month and by all accounts, it is shaping up to be one of the most unusual May Awareness years ever, thanks to the worldwide COVID-19 pandemic. While we may not knock it out of the park as we had hoped this year, any site that does come on board is a site gained during “unusual times”. We are asking people to keep up the good
work with their asks throughout May, while realizing it may not be a priority at the municipal level.
What you might consider is doing something at the residential level, during self-isolation. Why not encourage people to hang posters in their windows supporting HD awareness month? How about purple or blue porch/Christmas lights (#StringItUp4HD)? HD ornaments in a tree in your front yard – or sidewalk chalk (#ChalkItUp4HD)! Send messages of support to the HD community any way you can – from your home. We can still make HD Awareness Month a success – even if it’s virtual –
in May 2020!
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
HSC Announces Community Education Forum Seasonal Series
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.
We are working on confirming topics and speakers and cannot wait to share the line-up with you. Stay tuned to this page for updated details as they become available.
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!
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!
HOW YOU CAN HELP
2020 Amaryllis Campaign
As we look for hope during these unprecedented times we can remember the beautiful amaryllis flower. We are happy to be working with Van Noort Bulb Co. again this year who are currently growing over 20,000 bulbs for our 2020 amaryllis campaign.
Stay tuned for the announcement of our early bird contest next month!
“Where flowers bloom, so does hope.” ~ Lady Bird Johnson
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.