Raising awareness and having fun in the process

Cassie Eckart’s life is filled with radiating colors that shine through her paintings, photography, and singing in her church choir. She has shared her artistic talents by taking friends’ engagement photographs, teaching a painting class at a local senior center, and donating her paintings to FOP fundraisers. 

At the age of seven, Cassie started presenting with FOP symptoms. “One morning I woke up and could not move my arms anymore,” she says. Her doctors thought she had tight muscles in her arms and started her on physical therapy, even though during this time lumps started to form on her back. 

Cassie’s third grade teacher was neighbors with Stephanie Snow’s grandparents, who was the first person diagnosed with FOP in Santa Barbara County, and recognized the symptoms. The Snow family connected the Eckarts to Dr. Fredrick Kaplan who diagnosed Cassie with FOP. 

The Eckarts’ relationship with the Snows did not end there. The families partnered together for several fundraisers, including a yearly spring barbeque and a summer dinner, that raised more than a million dollars for the IFOPA. “At the barbeques, we always referred to Dr. Kaplan as the bean guy because he served the beans every year,” laughs Cassie. 

The IFOPA community has been a constant source of knowledge and encouragement since Cassie was diagnosed. “If I have something going on or a new flare up, I can ask questions and they are always willing to help and share suggestions from their own experiences.” 

On top of the IFOPA community, her support system through this journey has been her parents, Karen and Glen Eckart. 

One of her favorite pastimes is to travel down to Los Angeles to watch tv show tapings of Dancing with the Stars, American Idol, America’s Got Talent, So You Think You Can Dance, and The Voice. Cassie hands out FOP awareness bracelets when she is waiting in line. “I like to bring awareness to FOP, so every time I get a chance to tell people about FOP, I do.” 

The FOP bracelets have even ended up on the wrists of celebrities including Keith Urban, Jennifer Lopez, Ryan Seacrest, Bindi Irwin, Brad Paisley, Pink, and the Ray Chew Live Band of Dancing With The Stars. “Cassie received several hugs from Keith Urban when she gave him the bracelet, and Pink shared her birthday cake with us,” shares Karen. 

“I am really excited for the day they find a medicine that will stop the bone growth. The discovery of the gene gives me hope.” 

Even as her flare ups continue to progress, Cassie is not letting FOP slow her fun down. “I just want to have fun and live life to the fullest,” she concludes.