From Diagnosis to Fundraising

Krisman Family Bingo a Big Success

Before their son, Ethan, was diagnosed with fibrodysplasia ossificans progressiva (FOP), Jon and Erin had never heard of the ultra-rare disease. 

Their journey to a diagnosis started like many others: toes bent inward at birth, dismissed by the doctor as nothing serious. After Ethan started developing bumps on his back and forehead, the Krismans spent a year searching for answers. 

At the age of two, Ethan was finally diagnosed with FOP. After a year of processing Ethan’s diagnosis and learning more about the disease, the Krismans felt ready to start advocating for a better future for their son and everyone else impacted by FOP. 

With the support of their local community and the guidance of the IFOPA, they hosted a bingo fundraiser on February 24 in honor of Rare Disease Day

The event quickly sold out and, with 240 people in attendance, they were able to raise $34,000! 

"It was amazing to see all of that support from everyone,” Jon says. “We were definitely in shock to know so many people wanted to support the event and support the IFOPA and support our family."

Beyond the incredible fundraising results, the Krismans were also so proud to raise awareness. Thanks to Jon’s fellow firefighters, Ethan’s school district and local friends inviting their networks, hundreds of thousands of people learned about FOP

"The more people that know about FOP the better,” Jon says. “All the people who came to the event — how many more people are they going to tell about FOP?"

At the IFOPA, we’re committed to walking alongside families from the day they receive a diagnosis. We have been honored to partner with the Krisman family since Ethan’s diagnosis in 2022, and we’re grateful for their ongoing advocacy. 

They are already planning a 2025 bingo night and encourage other families to join them. Whether you’re able to spread the word about FOP to a few friends or plan a large-scale event, your voice is needed and appreciated. 

"Do whatever is right for you and your family,” Jon suggests. “Utilize what is available within your community. Every dollar helps."

If you’re interested in hosting your own fundraiser, please reach out to Cathryn Roys at [email protected] or +1 (843) 709-3244. We would love to serve you in any way we can and promote your event to the FOP community!

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