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In the Know – July 2020

VOLUME 15, ISSUE 7

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

HD and Histamines: Targeting Hybrid Receptors to Quiet Stressful Brain Talk

(HDBuzz.net: July 15, 2020)

Scientists recently used an antihistamine to quiet dopamine messages in the brain and treat HD-like symptoms in mice. But beware the hype suggesting that allergy medicines could be used to slow down HD.

Changing Jobs: Converting Other Cell Types into Neurons

(HDBuzz.net: June 23, 2020)

Because HD causes a loss of neurons in the brain, some researchers are exploring ways to replace them. Working with HD mice, scientists recently showed that supportive brain cells called glia can be coaxed into becoming new neurons.

COMMUNITY NEWS

Canadian Coalition for Genetic Fairness Pleased with Supreme Court of Canada Decision on Genetic Non-Discrimination Act

(HSC News Release: July 10, 2020, 2020)

The Canadian Coalition for Genetic Fairness (CCGF) commends the Supreme Court of Canada (SCC) for supporting the Genetic Non-Discrimination Act (GNDA), as it currently stands.

Teepee Creek man, Huntington Society Board Chair, Welcoming Supreme Court Ruling on Genetics Discrimination Law

(Everything GP: July 13, 2020)

The chair of the board for the Huntington Society of Canada says it was a banner day Friday when the Supreme Court of Canada upheld this country’s Genetic Non-Discrimination Act.

Supreme Court of Canada Upholds Genetic Non-Discrimination Law

(CBC News: July 10, 2020)

Canada’s highest court has issued a ruling today upholding a federal law preventing third parties, such as employers and insurance companies, from demanding genetic information from individuals.

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.

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

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

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.

Medical Assistance in Dying Virtual Presentation 

(Open to Residents of British Columbia)

Date: July 27, 2020
Time: 6:30 p.m. PDT
Topics:

  • What is palliative care and how can I access this within my community?
  • What is medical assistance in dying?
  • What are the eligibility criteria and process for accessing MAID?
  • What are some experiences of patients and families going through the process?

To register, please RSVP by July 24, 2020 to Natalie Cruz: ncruz@huntingtonsociety.ca  or 604-818-5963

**Registrants MUST provide an email address in order to receive the link to the meeting**

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

July marks the launch of our 2020 Amaryllis campaign. This year’s campaign is HSC’s largest yet, with 25,000 Orange Souvereign Amaryllis bulbs preparing to inspire hope across the country. Our dedicated Amaryllis volunteers help sell bulb kits to raise vital funds for our programs in research, services and education.

We are excited to kick off the 2020 Amaryllis Campaign with our Early Bird Contest! If you place your orders by August 31, you will be eligible for our 2020 Early Bird Prize, A Kindle!

To order your Amaryllis, visit our website at www.inspirehope.ca, email us at amaryllis@huntingtonsociety.ca or call 1-800-998-7398. Orders can be made at any time, with delivery dates from Oct. 1 to Dec. 4, 2020. Order today for your chance to win the Early Bird Prize!

Thank you for your continuing support and all you are doing to help us Inspire Hope!

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.

 


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