VOLUME 15, ISSUE 9
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 the conference has been rescheduled, you will find more information here.
RESEARCH NEWS
When Genes are Unstable: Targeting Somatic Instability in HD
(HDBuzz.net: Sept. 8, 2020)
CAG repeats expand in some parts of the body and brain as people with HD get older, a phenomenon known as somatic instability. Learn more about how researchers are exploring somatic instability and DNA repair to design therapies for HD.
COMMUNITY NEWS
Maike Zinabou
In 2008, Maike Zinabou joined the Huntington Society of Canada’s (HSC) Family Services Team and took on the role of Resource Centre Director (RCD) for West Central Ontario. During her time as RCD Maike provided compassionate support, education and advocacy to individuals and families affected by Huntington disease (HD) in the Kitchener, Guelph, Cambridge, Waterloo, Dufferin, Hamilton, St. Catherines and Niagara regions. Maike also facilitated numerous support groups in these areas.
Known for her strong advocacy skills, Maike was quite the force when she took on an issue for a client or a community member. She also had a great passion for education and learning.
The HD community was very near and dear to Maike’s heart. The regional HSC chapters, volunteers and HD awareness events were important to Maike and she looked forward to community events such as walks, fundraisers and the annual picnics in the park so she could connect with HD community members.
Maike truly enjoyed the outdoors, music and board/card games. The Family Services team will remember her choreographed singalongs to Abba tunes. The Ontario HD camp volunteers and participants will remember the plays and closing night talent shows. There may also be some memories of her “slightly” competitive nature when playing beach ball-baseball, Sequence and Rummy with the campers and volunteers. Maike also truly enjoyed the campfires at Lake Joe!
We are saddened to hear of Maike’s passing on August 17, 2020.
Memories and words of comfort will be collected and shared with Maike’s family at a future date.
Should you like to provide a submission, please send them to communications@huntingtonsociety.ca
Any questions about HSC services can be directed to Angèle Bénard, HSC’s national director of family services at abenard@huntingtonsociety.ca or 1-800-998-7398, ext. 132.
BC Woman Advocates for Awareness/Funds for Huntington Disease
Eight years ago, Lesley Nantel noticed that something was different with her dad on her wedding day. After an MRI, Nantel discovered there was a possibility her father had Huntington’s disease (HD).
Windsor/Essex Virtual Walk for Huntington Disease Surpasses $10,000 Fundraising Goal
Those taking part in the virtual walk for Huntington Disease in Windsor-Essex are hoping donations don’t slip without an official in-person event — and they look to be on the right track.
HSC Closed Facebook Support Group
In this online group you will gain access to an active group of people in Canada living at-risk for, living with or caring for someone with Huntington disease (HD). Individuals in this group will be asking questions, answering your questions and sharing stories of hope and support.
HSC Online Support Group for Those Living At-Risk for HD
Interested individuals will need to complete an intake form and meet with Corey Janke, HSC’s national social worker, via telephone to do an initial assessment, discuss expectations for confidentiality and group times/guidelines prior to the initial meeting. The maximum group size will consist of 8 participants.
COMMUNITY EVENTS/FUNDRAISERS – PHYSICALLY DISTANCED
Saskatchewan Walk to Cure Huntington Disease
At this year’s Saskatchewan Virtual Walk to Cure HD, everyone will exercise with their closest family and friends, while socially distanced wherever is the most convenient to them.
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
Huntington Heroes National Virtual Walk
This year, the Huntington Society of Canada (HSC) is asking all HD heroes from coast-to-coast-to-coast to stand with us as we walk alone in our first-ever Huntington Heroes National Virtual Walk.
Between Sept. 1 and Oct. 30, 2020 register, fundraise, and walk in your own neighbourhood. Compete in exciting challenges, work towards fantastic prizes, and help us meet our goal to raise $270,000 towards HD research and support services.
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
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
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.
DONOR RECOGNITION
HSC is pleased to recognize the Cambridge & North Dumfries Community Foundation for their support of the Cambridge and North Dumfries Family Services Outreach Program. Their generous support will have a direct impact on families and individuals living with HD in Cambridge, North Dumfries and surrounding rural areas. To learn more about the Cambridge & North Dumfries Community Foundation visit their website here.