VOLUME 15, ISSUE 6
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.
RESEARCH NEWS
Triplet Therapeutics Initiates SHIELD HD Natural History Study of Huntington Disease
(News Release: May 27, 2020)
Triplet Therapeutics, Inc., a biotechnology company leveraging human genetic insights, has announced a natural history study of Huntington’s disease (HD) to assess clinical outcomes and biomarkers that will inform upcoming interventional clinical trials. The study, called SHIELD HD, enrolled its first patients last week in Toronto, ON.
HD Young Adult Study Defines the Sweet Spot: Symptom-Free with Measurable Changes
(HDBuzz.net: May 27, 2020)
We know that HD-related changes can occur many years before symptom onset, but how early do those changes begin? A team of researchers set out to determine that with a new comprehensive study in pre-manifest HD young adults.
Researchers Develop New Method to Map Cholesterol Metabolism in Brain
A team of researchers led by Swansea University have developed new technology to monitor cholesterol in brain tissue which could uncover its relation to neurodegenerative disease and pave the way for the development of new treatments.
HSC NEWS
Huntington Society of Canada Announces New Chief Executive Officer
(HSC News Release: April 27, 2020)
The Huntington Society of Canada (HSC) is pleased to announce its board of directors has named Shelly Redman as chief executive officer. Shelly will assume her new role effective July 2, 2020.
Shelly has a strong track record of informed engagement and empowering leadership in the not-forprofit, health and wellness sector.
“Shelly is a strategic executive and dedicated advocate who brings proven leadership to the role at a critical time for the Huntington Society of Canada,” says Mack Erno, chair of the HSC board of directors. “On behalf of the board of directors, I am very excited to welcome Shelly to the HSC team.”
The Time is Now: HSC’s Digital Transformation is Coming
HSC is constantly looking for ways to improve what we do – and deliver information in an efficient and timely manner – right when you need it. As such, we have made the decision to go undergo a digital transformation.
2020 #LightItUp4HD Shines Brightly in May
May was Huntington disease (HD) Awareness Month and despite challenges brought about by the COVID-19 pandemic, sites around Canada and the world again lit up in support.
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 and 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 July 6, 2020 will be considered.
COMMUNITY NEWS
St. Thomas, ON Woman First Official Finisher in Race Across Tennessee
(CTV News, London: May 18, 2020)
Terri Biloski of St. Thomas, ON ran a whopping 1022 km in just under 12 days to be the first official finisher of the Laz Lake’s Great Virtual Race Across Tennessee. The reason she is doing this is to support the Huntington Society of Canada.
COMMUNITY EVENTS/FUNDRAISERS – PHYSICALLY DISTANCED
One Man. One Bike. 100 Miles.
A century ride is a badge of honor among cyclists. It’s a road cycling ride of 100 miles (160.9 km) or more. In Manny Ferreira’s case, his ride was a large loop from his home in Ayton, ON following a rural route to Southampton, ON (the furthest point) and back home via a different route. The chosen loop was a bit longer than a regular century ride – just over 178 km in total. While the ride was completed in 7 hr 43 min on June 6, 2020, you can still donate to raise funds for Huntington disease research and family services support, visit https://p2p.onecause.com/centuryride. All money raised will be matched by an anonymous donor!
Terri Runs Across Tennessee
My name is Terri Biloski and I’m going to run the Great Virtual Road Race Across Tennessee to raise funds and awareness for Huntington’s disease (HD). This race is 1000 km and my goal is raise $1000…but if you help me double that (by raising $2000) I will run back too!
COMMUNITY EVENTS/FUNDRAISERS – VIRTUAL
Sophie’s Keychains for HD
Sophie has been involved with the Huntington Society of Canada and the Saskatchewan Chapter for about 7 years now. This year, 
Sophie is designing and creating beaded keychains to help raise funds for HSC! Her keychains have dragonfly wings, as the dragonfly is recognized as a symbol of hope within HSC. She hopes her keychains will bring a smile and remind you of the incredible power of hope. Click here for more information.
As we are unable to come together physically this year due to COVID-19, it is more important than ever to come together as a community and support the families of Huntington disease.
Join us on June 27 at 10:00 a.m. (or a time of your choice) for a virtual run/walk! Click here for more information.
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 Community Education Forum Seasonal Series
Series Sponsor: Roche
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. The second will run on Nov. 14, 2020 and the third on Feb. 27, 2021 (both generously sponsored by Novartis). For more details, to register or to watch the recording from May 30, 2020 click here.
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!
“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.