VOLUME 15, ISSUE 5
May 15 is International Huntington Disease Awareness Day!
(HSC Blog Post: May 14, 2020)
The global Huntington’s Disease community is proud to announce May 15 as the International Huntington’s Disease Awareness Day, a special day for the global Huntington’s Disease (HD) community to unite together to raise awareness for Huntington’s Disease. The global Huntington’s Disease community is a big family brought together by HD.
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 the HSC 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.
RESEARCH NEWS
Fountain of Youth: HTT Protein Repairs Neurons by Maintaining Youthful State
(HDBuzz.net: May 12, 2020)
A team of scientists has recently published their findings on how our bodies are able to repair brain and spinal cord injuries. They found that the huntingtin protein plays an important role in repairing damaged nerve cells.
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 May 25, 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.
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 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 May 20, 2020 will be considered.
Spring 2020 Issue of Horizon Now Available
We are pleased to bring you a new edition of our national newsletter, Horizon. So much is going on that we have added four extra pages to this issue!
COMMUNITY NEWS
Northern Advocates Shine a Light on Huntington Disease
(CTV News Northern Ontario: May 13, 2020)
It’s a disease that affects about one in every 7,000 Canadians, and for the entire month of May, advocates around the country are raising awareness about Huntington disease.
Three Sisters, Two Scooters and a Susan
The Wawota Walk to Cure Huntington disease is the McCaw sister’s effort to raise awareness and funds.
May 20, 2020 is International Clinical Trials Day!
Clinical trials help to shape the future of medicine. That’s why Clinical Trials Ontario (CTO) is looking forward to celebrating International Clinical Trials Day on May 20, 2020. This month, we will be sharing clinical trial resources and stories that highlight the importance of clinical trials. Join the conversation on Twitter by following us at @clinicaltrialON and using the hashtags #ICTD2020 and #TalkClinicalTrials.
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 will be 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 is a bit longer than a regular century ride – just over 178 km in total. To support this solo ride to raise funds for Huntington disease research and family services support, visit https://p2p.onecause.com/centuryride.
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.
Join us for a virtual event and help raise funds to support those with Huntington disease! The Huntington Heroes theme acknowledges the everyday heroes that make up the HD Community – caregivers, professionals, and those at-risk or living with the disease who never stop fighting.
Even though 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! Click here for more information.
12th Annual Hope for a Cure Virtual Run and Walk
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 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.
Our first CEF will take place on May 30, 2020 and registration is now open. For more details 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 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.