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In the Know – August 2020

VOLUME 15, ISSUE 8

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

Caution Urged for the Use of Gene-Editing Technology CRISPR

(HDBuzz.net: Aug. 12, 2020)

A recent series of studies on the gene-editing method CRISPR have raised concerns about the suitability of this technology for the treatment of genetic illnesses such as Huntington’s disease.

Study Reveals Intricate Details about Huntington’s Disease Protein

(University at Buffalo News Release: July 17, 2020)

A new study reveals intricate details about the biology of the huntingtin protein (HTT), which is responsible for Huntington’s disease.

COMMUNITY NEWS

2020 Huntington Society of Canada Annual General Meeting

Notice is hereby given of the 2020 Annual General Meeting of the Huntington Society of Canada.

Date: Saturday, Sept. 12, 2020
Time: 3:00 p.m. (EDT)
Place: Virtually via GoToWebinar. To register, go to: https://attendee.gotowebinar.com/register/79001418733938955

After registering, you will receive a confirmation email containing information about joining the webinar. If you cannot attend and would like to vote by proxy, please click here.

Please visit www.huntingtonsociety.ca or contact us at info@huntingtonsociety.ca or 1-800-998-7398 for further details.

Safety and Independence in HD Factsheet Released

Huntington disease (HD) is a complex neurodegenerative disease, affecting virtually everything about a person – including control of movements, regulation of emotions, judgment, impulse control and self-awareness. As the disease progresses, people living with HD may not fully understand the consequences of their actions and can unintentionally put themselves in risky situations.

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.

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.

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

The Amaryllis Early-Bird contest is here! Place your 2020 Amaryllis order before August 31st to be entered to win a Kindle e-reader. 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.

 


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