FSHD Society Alberta Canada Chapter

Home
Canada
Calgary, AB
FSHD Society Alberta Canada Chapter

The Alberta Chapter of the FSHD Society Our hope for the future is to find a cure.

About FSHD Society Alberta Chapter

Thank you for visiting the Facebook news page for the Alberta Chapter of the FSHD Society! We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected. We use this page to post about local chapter events, fundraisers, and education programs. You can learn more about our chapter at FSHDSociety.org/Alberta

If you want to join the community and add to the conversation on Facebook, please head on over to the National FSHD Society page .

10/02/2026

Well, this post is coming absolutely waaaaay too late, but WOW - we are still buzzing from the energy, love and support we felt from our annual Walk and Roll on September 12! We raised almost $79,000. Let that sit for a minute. Is that not WILD?! And it all came about because of YOU! So humbly, we say thank you from the bottom of our hearts. We have the best little community ❤️.

Also have to shoutout to our fabulous volunteers. Every year you’ve shown up and made our event speed along effortlessly! “Alone we can do so little; together we can do so much.” — Helen Keller

Hopefully, by next year’s event, we’ll be celebrating how GOOD and STRONG we feel because there is finally a cure!

09/11/2026

Y’all, bringing us to tears here…with all your amazing donations and efforts we are now OVER $65,000 raised! We are SO feeling the love!

Now it’s time to CELEBRATE - please don’t forget to join us tomorrow at our Walk and Roll at the RiverWalk Plaza in the East Village where there will be amazing prizes to be won (including a new prize from Climb and Grow Studio), face painting, pizza and ice cream!

Registration kicks off at 0915, event starts at 1000!

If you can, please sign up online ahead of time so we know the numbers to expect! It's free to register for the event - you just have to click "Register to Attend" to kick things off!

https://pro.gofundme.com/event/2026-alberta-walk-and-roll-to-cure-fshd/e776902

And we are walking and rolling and PARTYING rain or shine, so come prepared!

06/22/2026

What an amazing night we had coming together on World FSHD Day! Thanks to all those who came and connected with our beautiful little community! We admire each and every one of you!

06/06/2026

Do we want to hear the coolest thing? Get closer. I’ll whisper it in your ear…. WILD ROSE BREWERY HAS MADE THE FSHD CANADA FOUNDATION THEIR CHOSEN CHARITY FOR THEIR PATRON’S PINT FOR THE MONTH OF JUNE! That means that with every sale of their featured pint – the “Big Hoodoo” – 0.25 cents will go STRAIGHT to FSHD Canada Foundation!

We could literally not be more thrilled (and thankful)!! What an amazing opportunity for fundraising – and through drinking b**r? Come on now people! So your sole and only goal for the month of June is to drink as much of the Big Hoodoo as is humanly possible. Gather your friends, hit up the patio at Wild Rose Brewery, and commence raising funds for FSHD Canada!

More details here: https://wildrosebrewery.com/pages/community

05/10/2026

BetterLife FSHD Canada, a new digital health platform developed in partnership with CNDR and the FSHD Canada Foundation, is launching to support individuals living with facioscapulohumeral muscular dystrophy (FSHD) across Canada. The platform empowers its users to track symptoms, better understand their health, and access personalized resources, while also contributing directly to research through secure data sharing with approved investigators.

By integrating patient-reported data with CNDR infrastructure, BetterLife FSHD Canada aims to accelerate real-world evidence generation, support clinical trial matching, and advance the development of future therapies.

Learn more and join at ca.BetterLifeFSHD.org!

01/26/2026

Happy New Year to our strong and powerful little community! We hope your 2026 has been off to a fabulous start so far!

This is a quick message to remind you to register for our Canada-wide virtual meeting with the Canadian FSHD community on Thursday February 5, 2026 @ 6pm MST. You probably already got our email about the meeting and the request to register online, but just in case you haven’t and would like to register, follow this link: https://fshdsociety.my.site.com/s/meeting-rsvp?varCampaignId=701Ut00000p8hNU

We will have several guest speakers:
- Neil Camarta will provide updates on the FSHD Canada Foundation and the work they are doing.
- Blaine Penny will discuss the release of BetterLife FSHD in Canada.
- Satellos: Muscle regeneration and possible treatments.
- Avidity Biosciences: Clinical trial updates!

Hope to “see” you there!

12/08/2025

2025 was a very productive year for the FSHD Canada Foundation, and we are so very thankful for all the support and donations. Every dollar you have donated means so much to us, and we are forever grateful!

Remember that there’s still a few days left in 2025 if you want to make a financial contribution before the end of the tax year! If you have some extra cash around you’d like to donate to a good cause, please follow this link: https://fshd.ca/donate/

THANK YOU and many blessings for the new year! 2026 is going to be EPIC.

Address

Calgary, AB

Website

https://www.fshdsociety.org/connect/alberta

Alerts

Be the first to know and let us send you an email when FSHD Society Alberta Canada Chapter posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organization

Send a message to FSHD Society Alberta Canada Chapter:

Want your organization to be the top-listed non profit organization in Calgary?