Organizing a Walk & Roll ─ if I can do it, so can you!

by Susan Aumiller, Powell, Ohio

Last year, soon after my son and husband were diagnosed with FSHD, I called the FSH Society and said I’d like to organize a fundraiser. Within weeks, I found myself launching the first Walk & Roll to Cure FSHD in the state of Ohio. I had never done anything like that before.

I’m no party planner. It seemed overwhelming to consider putting on an event like this. Would anyone show up? How would we make it educational and fun so that those who did show up would want to come back next year? Where do I begin?

Great news! You’re not alone. There’s a team at the FSH Society waiting to help you get started and guide you every step of the way. Let me introduce them to you.

Anna Gilmore is an angel who pulls it all together. She is ready to give you all the tools you need to put on a successful event, from a donation website to checklists. Anna will order your marketing materials ─ posters, postcards, signage, T-shirts ─ and keep you up to speed on any loose ends. She is responsive to every request and anticipates needs that may arise.

Beth Johnston will hold your hand throughout the entire process. She and Anna schedule web conference calls for all of the Walk & Roll leaders. The calls are informative and break down the tasks into manageable chunks to keep you on track. They make possible what seems like an insurmountable undertaking. It would be difficult not to be successful if you commit to participating in all of the training calls and studying the written materials provided in the Society’s Walk Manual. The training calls are recorded and available to listen to at any time, and to share with your committee members.

Once you’ve chosen a date and location, Anna can work her magic and put together pre-event marketing materials so you can start advertising and soliciting for your event. It’s at that point where you can see a light at the end of the tunnel. Once you have postcards and posters in-hand, it’s real. That’s when things get exciting!

I have always enjoyed participating in fundraising events, but I never imagined I’d be the person behind the curtain organizing one. It takes dedication and desire. One thing we all share is our commitment to keeping our eye on the ball and raising those much-needed funds. Brilliant researchers and scientists ─ and all the FSHD patients and families ─ are counting on us.

What are you waiting for? Contact Beth Johnson today at


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