Huntington Society Ottawa Chapter

You may have already heard the sad news about the Roche GENERATION HD1 clinical trial being prematurely stopped. This phase III study was designed to evaluate t...he efficacy and safety of RG6042 (known as tominersen). No specific new safety concerns have been raised so far; however, on March 22, 2021 the study was halted early. This is extremely disappointing and difficult news for the entire HD community, but especially for the families participating in the trial, and we appreciate that you likely have many questions. Please click here for more information, as well as where to find support and resources: https://www.huntingtonsociety.ca/roche-generation-hd1-clin/ See more

Only 3 more days until HSC’s FREE Virtual National Conference! As we count down the days, we will also be counting down the top 6 reasons why we love conference...! Reason #03 - Community development and networking opportunities: We’ll wave via video screens or catch up by typing in chat bars. At #HDCon21 we’ll develop, learn and connect as a community like never before. CLICK HERE TO REGISTER: https://inevent.com//HuntingtonSocietyofCanada/HS/form.php #HDCon21 #HSCVirtualConference #NationalConference

Everyone is welcome. Please register.

YPAHD is for young adults under 35. Register now to be a part of Virtual YPAHD day on March 27, and connect with other young people.

Register today for HSC’s Huntington Heroes National Virtual Walk, taking place May 29-30 across Canada. When you register, why not choose the awesome Huntington... Heroes T-shirt package. It’s bright, fun, and makes for the perfect ensemble on walk day or any day. It’s $35 when you register for the walk but you have to have your order in by April 25th! Click here to get your Huntington Heroes T-shirt and register for HSC’s National Virtual Walk: https://p2p.onecause.com/hscnationalwalk #HuntingtonHeroes #WalkAlone #StandTogether

I learned of a new Fundraising Tool from Huntington Society of Canada, called FlipGive! Give it a try, and raise money for HSC Ottawa Chapter! Signing up is FREE AND EASY. When you purchase anything at these stores (HSC gets cash back!). Instructions and links are below. And, there is a contest...Let's Get Ottawa on the Map and SHOP SHOP SHOP...especially this year when most of our shopping will be ONLINE!!... YES...YOU CERTAINLY CAN SHARE THIS POST WITH YOUR FRIENDS AND FAMILY...the more the merrier HSC will be!! I signed up already. Sharon Haig, Volunteer President, Ottawa Chapter ++++++++++ The latest campaign using the website/app called FlipGive was sent out in an email on October 21st to our mailing list, so I hope you had a chance to view it (attached)! Basically this website has partnerships with major retailers including various grocery stores, Esso gas stations, Walmart, Nike, Under Armour, Tim Horton's , Sport Chek, Hudson's Bay (and MANY more) that provide free kickback donations to HSC for purchases made through the FlipGive platform. Depending on the retailer, you can purchase an e-gift card to use in store or online, or can click on the retailer on FlipGive and be directed to their normal online store to make purchases while receiving the kickback. For example, Under Armour offers an 8% kickback and Esso offers 3%. If I purchase a $100 Esso e-gift card, HSC gets a kickback donation of $3 just for purchasing something I was going to spend money on anyway. This may seem small, but it will add up quick with the large community that we have across Canada! The goal is to have the community make whatever regular purchases they can through FlipGive so HSC receives the free kickback donations. I have been buying Esso e-gift cards to make my gas purchases, and Sobey's gift cards for my grocery purchases. Christmas is just around the corner so I will definitely be purchasing my gifts through FlipGive as well! The FlipGive app is a great way to store and use e-gift cards and to find which retailers are partnered with FlipGive nearby. We are running a friendly competition between chapters to see who can raise the most money through FlipGive from now until March! More details on the competition and prizes will be released soon. Here’s how to get started: Go here: https://try.flipgive.com/hsc/ Click on your chapter (if you don’t have a chapter, choose who you would like to support!) Join the party! Click "Join This Team" Create an account using only your name, email and password (it’s free!) Shop through FlipGive to earn money back for HSC on purchases you’d make anyways. Essentially, contribute to HSC as you shop! Share the link https://try.flipgive.com/hsc/ with your community, family and friends everyone can get involved! More information can be found on our website at www.hscflipgive.ca!

Update for HD Runners! It is no longer necessary to register for with Tamarack Ottawa Race Weekend to participate in the RaceHD Ottawa event. Simpy follow the link to the Virtual Ottawa Race at https://p2p.onecause.com/racehd to sign up or sponsor a runner. Runners will receive great HD swag based on their fundraising efforts! You set your course, close to your home, and run your race at a time that is comfortable for you while practicing good social distancing. ... Runners can still sign up with Tamarack if they want to receive the T-Shirt, Finisher Medal, and have their time recorded officially as well as receiving 50% off next year's registration.

Attention all RaceHD Runners! UPDATE: Please see May 28th post with updated registration process. No longer necessary to sign up for the Tamarack Race. Although the usual events for Ottawa Race Weekend have been cancelled, the Race for HD goes on, as does Ottawa Race Weekend. The format of the race has now gone Virtual!... What does that mean? Runners still sign up with Tamarack Ottawa Race Weekend for their target distances (2, 5, 10, half, full marathon, and a few new unique options). Runners still get t-shirts and finisher medals. Runners then complete their run any time over a period of several weeks on a course of their own design, tracking with an accepted app on their phone (MapMyRun or similar) and report back to the race organizers when completed. Full details are on the RunOttawa site. Note that registering this year will get you a 50% discount for the 2021 events. With many of our events cancelled this spring due to the COVID-19 pandemic, we are really looking forward to everyone coming out to (virtually) participate in this one spring event! Sign up as an individual or join a team on the RaceHD site, or just go to the same site to support your favorite team! We are returning to the older two-step registration process, as the RaceHD site makes the fundraising more fun and more competitive. Race registration is step one at https://www.runottawa.ca/ followed by fundraising registration on the RaceHD site at https://www.huntingtonsociety.ca/events/ (choose Ottawa under Virtual Events).

Back in February, the wonderful people at ALS Agrodrain Ltd hosted a soccer tournament to benefit the Huntington Society of Canada. We are most thankful to the host and their partners The Paterson Group, David Schaeffer Engineering Limited, and Mattamy Homes who raised $10,000 for HD Research and Support. In this time of uncertainty about our planned HD events, this contribution is most deeply appreciated!

Nominate a Difference Maker! At the upcoming HSC National Conference (Niagara Falls, November 13-14, 2020) several awards will be presented to members of the Huntington Community. Nominations are now open and being accepted by the national office. Please think about any members or supporters of our community who you feel should be honoured this year for making a difference. A few minutes of your time can provide the recognition that a difference maker truly deserves! DEADLINE FOR SUBMISSIONS IS MAY 6, 2020. A list of awards and nomination forms were distributed to the Ottawa Chapter mailing list, or can be downloaded from https://www.huntingtonsociety.ca/awards/