2025 Walk & Roll to Cure FSHD – Live Updates & Weekly Coverage

The 2025 Walk & Roll season has ended, but we’ve included all our weekly updates (photos, videos, news coverage, stats, and more) below. A huge and heartfelt thank you all our Walk Leaders, Chapter Leaders, Team Captains, and participants for your hard work and for making 2025 a phenomenal success. Together, we raised more than $1.1 million to support research into treatments and a cure for FSHD.

Watch the highlight reel on Youtube

 

Weekend 1: Saturday, Sept. 6 and Sunday, Sept. 7

Walk & Roll season is off to an incredible start with just over $95.5k raised. More than 333 participants gathered across: Sacramento, California; North and South Dakota; Colorado; and the Pacific Northwest. Participants shared smiles, stories, and community spirit.

News & Notes

• This year, Colorado hosted their 10th annual Walk & Roll. At the event, Michael Ahlers shared two inspirational stories. Hear Michael speak on Youtube >>
• The Sacramento Bee published an article about the Sacramento Walk & Roll compiling the stories of Brittany, Drew, and Paul. Read the article HERE >>

You can view selected photos from this week on our social media or view the 2025 Walk & Roll Photo Gallery for weekly updates.

Weekend 2: Saturday, Sept. 13 and Sunday, Sept. 14

Week Two of Walk & Roll season was another huge success with both Canadian Walks breaking records and amazing community spirit across all our events. 714 participants across Alberta & Ontario, Canada, Chicago, and Michigan raised $355k! Phenomenal!

News & Notes

• Thank you to an anonymous donor who matched gifts 1:1 for all our Canadian Walk & Rolls!
• A special shoutout to Joanne’s Warriors for raising over $130k!
• Stay tuned for news coverage and a magazine article covering the Chicagoland Walk & Roll!

You can view selected photos from this week on our social media or view the 2025 Walk & Roll Photo Gallery for weekly updates.

 

Weekend 3: Saturday, Sept. 20 and Sunday, Sept. 21

What a phenomenal weekend of local events AND our International Virtual Walk & Roll. We started strong with the release of the 2025 Walk & Roll Special episode of FSHD Straight Talk with Tim Hollenback. Give the episode a listen on Youtube, Spotify, Apple Podcasts, or wherever you get your podcasts!

In addition to the post, across seven events, we raised $338,900 thanks to the help of over 500 participants. Thank you to everyone who attended this weekend’s events in: Columbus, Ohio; San Diego, CA; Minnesota; Northeast Florida; the Mid-Atlantic; St. Louis, MO; and New England!

News & Notes

• Watch this amazing highlight reel covering the 2025 San Diego Walk & Roll, courtesy of Jared Jacobsen!
• Congratulations to Amy Bekier and the San Diego Walk for bringing in $95k, far surpassing their original goal! The San Diego Walk was shared with long-time FSHD advocate Max Adler, staff from Avidity Biosciences, and featured an original and beautiful coloring book featuring kids in powerchairs and using orthotics: a heart-warming way to make sure our Early Onset Youth see themselves represented.
• Congrats to Heather Kalista, of the Columbus Walk, on leading her first ever walk as she took up the Sue Aumiller’s mantile! Additionally, a huge shout out to Dr. Harper’s lab (and family!) and our partners at Armatus Bio and Nationwide Children’s Hopsital for showing up in full force!
• The Mid-Atlantic Walk & Roll knocked it out of the park with $118,000 raised.
• Representatives from Epicrispr Biotechnologies – including Dr. Weston Miller, Chief Medical Officer – were on hand to share updates with the New England and Mid-Atlantic events!
• Minnesota had a perfect weather day, and connected new FSHD community members to the society!
• NE Florida hit their goal and had a lovely day at the zoo.
• St. Louis  had one of the most fun and exciting Poker Walk & Roll to Cure FSHD events, fun was had by all.

Walk & Roll season is still going strong and we look forward to more highlights and sharing community spirit. You can view selected photos from this week on our social media or view the 2025 Walk & Roll Photo Gallery for weekly updates.

Weekend 4: Saturday, Sept. 27 and Sunday, Sept. 28

Thank you to everyone who made possible another phenomenal weekend of Walk & Rolls across the United States! We raised $78,000 this weekend with the help of over 238 participants. This weekend proved that smaller events can still be mighty.

News & Notes

• Long Island enjoyed beautiful weather and deserves a huge shout out for raising ~$400 per participant!
• Intermountain (Idaho Falls) deserves a huge shout out for raising $16,000 in their first year including $5000 raised during the event through raffle ticket sales. Check out this awesome radio/local news coverage of the event.
• Virginia crossed their fingers long enough for the rain to hold off. Multiple new participants joined their long running event, leading to a phenomenal community celebration.
• New Jersey Shore enjoyed a gorgeous morning along the shore and featured some beautifully worded patient testimonials.

Walk & Roll season is still going strong and we look forward to more highlights and sharing community spirit. You can view selected photos from this week on our social media or view the 2025 Walk & Roll Photo Gallery for weekly updates.

Weekend 5: Saturday, Oct. 4 and Sunday, Oct. 5

With Walk & Roll season slowing down, we’re thrilled to share that we surpassed our $1 million goal and kept on going. Thank you to everyone who joined us for this past weekend’s three events, which ones again stretched from coast to coast (US). We brought in just over $117,000 with the help of more than 225 participants.

News & Notes

• Atlanta held another amazing event filled with long-time community members and plenty of good spirit.
• North Carolina held a wonderful event in Charlotte and even surpassed their fundraising goal, bringing in ~$26,000!
• Los Angeles hosted one of their largest events yet with over 50 attendees who came fully decked out in FSHD Society hats and FSHD awareness gear.

Walk & Roll season is still going strong and we look forward to more highlights and sharing community spirit. You can view selected photos from this week on our social media or view the 2025 Walk & Roll Photo Gallery for weekly updates.

Weekend 6: Saturday, Oct. 11

We celebrated another successful weekend with the small but mighty Texas Walk & Roll. 30 participants helped raise just over $13,000 and gathered together for a beautiful event in the Texas sun.

We have one event left to go: the Western PA Drum & Roll to Cure FSHD. News is already abuzz, read this coverage of Drum & Roll Leader Mark Christman and the Oct. 26 event.

Walk & Roll season is slowing to a close, but we look forward to more highlights and sharing community spirit. You can view selected photos from this week on our social media or view the 2025 Walk & Roll Photo Gallery for weekly updates.

Weekend 7: Sunday, Oct. 26

The Drum & Roll to Cure FSHD in Western Pennsylvania was an inspiring and memorable event that brought together more than 50 attendees raising over $85,000!

It was a day filled with energy, connection, and community spirit. Guests grooved to the drums, danced together, and enjoyed the beloved Western PA tradition—the cookie table—while celebrating progress toward a future free of FSHD.

Thank you to everyone who joined us, donated, and helped make this event such a meaningful success.