Walking & Rolling Toward a Cure!


We are excited to announce the launch of our first nationally branded event, the Walk & Roll to Cure FSHD. This signature fundraising event will take place in September and early October 2018 in several locations around the country, with additional sites being added in 2019.


FSH Society Walk & Roll fundraising events have been held in the past (in San Diego, Cape Cod, and Colorado), but this is the first time we have coordinated the branding, messaging, and execution, offering an unprecedented level of support to local volunteer leaders.

Five brave Walk & Roll “Pioneer” volunteers have agreed to attend monthly training sessions, beta-test all of the fundraising materials, the software platform, instructions, and procedures, offering their feedback and insight as they prepare to host their events in September and October. Because of their participation and leadership, we will be able to confidently launch our signature Walk & Roll fundraiser with a standard “toolkit” for people who would like to host a similar event in their area in 2019.

The Walk & Roll to Cure FSHD is about so much more than fundraising. There is great power in an event like this. The Walk & Roll will:

  • Build community – On walk day, for a few hours, we all stand together as one. Living with FSHD can be a lonely road. At the walk, we realize no one travels it alone.
  • Empower patients and families – Knowledge is power. We come together to walk, but we leave with knowledge, connection, inspiration and new determination to make change happen.
  • Tell the story – As a participant, each is asked to raised funds. In raising funds, you are challenged to tell your story: how FSHD has impacted your family; how the FSH Society has helped; your hope for the future of all impacted. It’s not every day that the door to that conversation is opened, but the Walk does that. Even if someone says no to a donation, they are more informed and aware about FSHD and its impact.
  • Build programs – Events like this draw a crowd and engage a wide cross-section of people who bring unique talents and interests that can be plugged into other chapter events.
  • Bring tremendous fundraising potential – Margaret Mead said, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it is the only thing that ever has.” Each person raising a little adds up to a lot. The funds raised through this event may be the ones that fund a cure.

The Walk & Roll to Cure FSHD is just the first step in the development and roll-out of FSH Society chapters across the country. We will unveil the full chapter program at the FSHD Connect Conference in Las Vegas this June.

Beth Johnston, FSH Society Chief Community Development Officer, is heading up the effort to create local FSH Society chapters around the country. If you would like more information about this new program and how you can participate, please contact her at Beth.Johnston@fshsociety.org.


Mark your calendars!

Pioneering Walk & Roll to Cure FSHD events in 2018:

  • September 8, 2018: Castle Rock, CO fshsocietycolorado.org – Katie Ruekert, pioneer leader
  • September 15, 2018: Dublin, OH fshsocietycolumbus.org – Susan Aumiller, pioneer leader
  • September 16, 2018: Bay Area “Team Walk & Roll to Cure FSHD” will participate in an event in Alameda, California, to raise awareness and funds fshsocietybayarea.org – Nez Bennouna, pioneer leader.
  • September 22, 2018: Puyallup, WA fshsocietynorthwest.org Nancy Payton, pioneer leader
  • October, Date TBD: Raleigh, NC fshsocietynorthcarolina.org – Meredith Huml, pioneer leader
CO Walk & Roll 2017
The 2017 CO Walk & Roll


“People acting together as a group can accomplish things which no individual acting alone could ever hope to bring about.”     —Franklin D. Roosevelt




7 responses to “Walking & Rolling Toward a Cure!”

  1. Are there folks in the Atlanta Metropolitan Area that would want to meet up and do a walk and roll on the Atlanta Beltline or the Silver Comet Trail? Both are flat and paved.Silver Comet Trail at Floyd Rd (I think that’s the spot) is paved and has a restroom and water.

    • Hi, Bruce! We do have some members in the Atlanta area. Would you like us to connect you with them? Thanks! -Anna (anna.gilmore@fshsociety.org)

      • That would be nice! Feel free to forward my e-mail. I’ve been scoping out parts of the Silver Comet Trail that are wheelchair accessible and have restrooms. It’s a paved railtrail with about a 2% grade at most. The east end (towards Atlanta) can get pretty busy, but it calms down further out. I haven’t visited the Beltline yet, but that is a mixed use paved trail over a reclaimed rail line around parts of Atlanta. It might be fun to have an informal walk and roll.

  2. Hello – Are there any members in the Los Angeles area who would like to figure out a spot to do a walk and roll? I would love to participate, but I don’t see one listed for San Diego or anywhere in the Southern California/Los Angeles area.

    • Dear Graciela,
      There isn’t currently a plan for a Walk & Roll in the LA area, but there is a new Chapter forming there! They have a different fundraiser planned for October, and I’m sure they’re eager to meet new folks in the area. I’d be happy to out you in touch with the group! The new director, Laurie, can be reached at: LosAngelesChapter@fshsociety.org. Thank you!

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