Community Fundraising for the IFOPA Goes Virtual

Fundraising events by the FOP community help the IFOPA fund critical research and support programs for individuals with FOP and their families. As the FOP community and the world adjusted to the unexpected changes COVID-19 brought, it was necessary for the IFOPA to cancel or postpone a few fundraising events in order to ensure the safety of our family, friends and communities. 

The COVID-19 crisis underscores the need for the IFOPA's education and support programs for families and the need to press forward with research to develop treatments and a cure for FOP. Fundraising, even during these challenging times, must continue. Several FOP families embraced this need, got creative and change — and even developed — fundraising events to work in a virtual environment so fundraising can continue.

Check out these events going virtual in Summer/Fall 2020

Midnight Sun Color Run, August 24-29 — This fun color run has been held in Kotzebue, Alaska for 5 years and organizers Jade Hill and Lucy Mae McConnell didn’t want to disappoint their supportive community and cancel this year’s event. They got creative and held a week-long event where participants could walk or run the route at their convenience. As part of the fun, participants found color packets in a scavenger hunt along the route. A tie-dye t-shirt campaign added to their fundraising plans.

B.A.D. to the Bone, October 1-31 — FOP mom Wendy Henke planned a family-friendly bike ride in honor of her son Justin. The original in-person event was planned along the C&D Canal so participants could Bike Across Delaware. When COVID-19 caused a shift in plans, Wendy decided to remake B.A.D. to the Bone into a ‘bare bones’ event where participants from anywhere can donate and ride 15 miles wherever they are in honor of Justin, at any time during October. Get more information at

ZipperQ, October 3 — The family-friendly event that has become an October tradition in Claremore, Oklahoma for the last 8 years is back in 2020... with a big change! ZipperQ is shifting from an in-person BBQ competition to a large BBQ dinner donation event for 25 local area nonprofits and first-responder agencies. Teams will be provided an organization to cook for when they register, and meals will be delivered to organizations all over Claremore at 3 pm. Get more information at

FOP Ashley’s Cure Finding a Cure Gala, October 22 — The Martucci family is hosting the 4th Finding a Cure Gala to raise funds for research to find treatments and a cure for FOP. Originally planned as an in-person gala in New York City, the family decided to shift to a virtual format where attendees will hear from family members, the FOP community, get updates on FOP research and can participate in exciting silent and live auctions. For more information, visit

Gaming for a Cure, October 24 — This is a new event and the first-ever video game tournament fundraiser for the IFOPA. FOP mom Tiffanie Williams wanted to host a virtual fundraiser her sons could participate in. Since they’re gamers, a video game tournament was a perfect opportunity. Gaming for a Cure is a Super Smash Brothers Ultimate event on Nintendo Switch where participants of all skill levels can compete in different brackets. There’s no charge to play, but donations are accepted. To register, click here. Have fun playing Super Smash Brothers and help us SMASH FOP!

The year isn't over! For help in planning your virtual fundraiser, contact Fundraising and Special Projects Manager, Cathryn Roys, at [email protected].

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