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In the Know – October 2020

VOLUME 15, ISSUE 10

RESEARCH NEWS

Updates from the European Huntinton’s Disease Network (EHDN) Plenary Meeting 2020 

(HDBuzz.net: Oct. 6, 2020)

Read our summary of the latest updates from the 2020 EHDN Plenary Meeting.

Sad News from the SIGNAL Study: Pepinemab Does Not Influence HD Symptoms

(HDBuzz.net: Sept.23, 2020)

The SIGNAL study did not meet its key clinical goals for Huntington disease to slow or improve HD symptoms, but the results are still informative for the HD community and other fields.

HSC News

Roche/HSC Burden of Illness Study

The Huntington Society of Canada (HSC) is working in partnership with Hoffmann-La Roche Ltd. to better understand Huntington disease and its impact in Canada. You are being invited to participate in this research study because you are either a person living with Huntington disease or the caregiver of a person diagnosed with Huntington disease (HD). If interested in participating in this research study, please contact Angèle Bénard, national director of family services at abenard@huntingtonsociety.ca for a link to the study.

HSC to Introduce New Fundraising Platform

Stay tuned as over the next couple of weeks we prepare to launch a new team fundraising initiative that ANYONE can participate in.  As the holiday season approaches, we are excited to present a way for our community to support the organization while buying items  you were going to buy anyway.  Watch this space!

HSC 2020 Clinical Fellowship Now Open for Applications

The Huntington Society of Canada (HSC) is pleased to offer the Clinical Fellowship program (Fellowship) as a strategic initiative to encourage promising young clinicians to enter into clinical training in Huntington’s disease (HD). This fellowship of $80,000 will fund a one-year clinical training program. The purpose of this post-residency training is to create expertise in the diagnosis and management of HD.

2019-2020 HSC Annual Report Now Available

In many respects, this has been twelve months of transition for HSC. As we approached the end of our fiscal year in March, COVID-19 struck and lockdown began in Canada. HSC’s staff and volunteers took all these changes in stride. Even when we were forced into a new world of virtual operations, we kept our eyes squarely on HSC’s vision: aspiring to a world free from Huntington disease (HD) and maximizing the quality of life of individuals affected by HD.

And over the past year, we did that in many ways….

Fall 2020 Horizon Now Available

HSC’s recent achievements are reflected in our fall 2020 issue of Horizon. It sits at 18 pages – our biggest issue ever and a testament to all of the good news stories that our community continues to generate.

COVID-19 Fall/Winter Activities Factsheet Released

Our “new normal” means that we have the ability to plan for the changing seasons—to be proactive about how we choose to live with COVID-19 this Fall and Winter.  As our days grow shorter and the weather gets colder, we can organize and prepare our lives for physical activity, social engagement and creativity.

COMMUNITY NEWS

Hike of Heroes Fundraiser for Huntington’s Disease Held Virtually

The annual fundraiser for Huntington’s disease is typically held at MacNaughton Park with a walk, a barbecue and children’s activities. Due to COVID-19, this year’s event has changed and the walk was held “virtually” on Sat., Sept. 26.

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.

With multiple huntingtin-lowering trials in progress and more on the way, it’s a time of great progress and excitement in research to develop and test new drugs to fight Huntington disease (HD). But lots of new therapies means more research and terminology that could confuse and overwhelm, and more hype that could lead to disappointment. HDBuzz editors, Dr. Jeff Carroll and Dr. Ed Wild are here to explain what’s going on, what’s coming soon, what it all means, and where to direct your excitement and energy in order to help in the fight.

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.

 


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