By Vikram Bala ‘20, Staff Writer

Every year, on a chilly fall morning, a group comprised of Newark Academy students, alumni, avid runners, family members, and dogs come to the 5K Run for FOP Research.  The first run took place in 2003, and was dedicated to alumnus Ian Cali, who was diagnosed with FOP. Whether you were looking to compete in the race, stroll in the back woods of Newark Academy, or throw colored cornstarch at people, coming out for the Run for FOP Research supports a cause that is an integral part of Newark Academy’s identity.  

FOP, which stands for fibrodysplasia ossificans progressiva, is a rare genetic disease in which there is an accumulation of extraskeletal bone in muscle and other soft tissue. The bone slowly replaces the ligaments and muscles — “ossified” means to turn into bone, hence the name ossificans. This condition restricts movement and can lead to immobility. To give you an idea of the rarity of FOP, imagine that a football stadium holds 100,000 people. It would take twenty football stadiums in order to find just one person with FOP. There are an estimated 3,500 individuals affected worldwide.  For thirteen years, the student council has voted to keep this event in the mix, although no current council representatives have attended Newark Academy at the same time as Ian Cali. Junior Class President Elliott Zornitsky ‘18 explained, “I’ve never met Ian, but I participate in the run because he is an alumnus and thus still part of the community: the FOP cause is a tradition that many students and faculty alike are committed to.”

From preparing the Wrestling Gym with food, registration tables, and balloons, to filling bottles with color and organizing student volunteers, the student council had their hands very full this year. Ms. Duszak, who played a crucial role in organizing and planning the run, said that the run symbolizes “community, hope, and tradition.” One of her favorite aspects was how “the council and volunteers worked together in every aspect — everyone did their part.” Not only does this event bring together current members of the community, but it also unites alumni and even prospective students. 

The support from this year’s participants generated over ten thousand dollars for the Ian L. Cali Fund at the University of Pennsylvania. The funds are  being used to provide treatment to a young boy named Cade, who was recently diagnosed with FOP. This is an exciting year for FOP research, as Clementia Pharmaceuticals Inc. recently discovered a breakthrough treatment in October. This treatment would help slow and reduce the extraskeletal bone growth caused by FOP. For some patients, it could even provide a respite from the effects of FOP.

What makes the Run for FOP Research unique is that FOP is not a “catchy” disease. Most people do not know what it is — and that’s why our support is important. That’s what this community is about. Aashna Parameshwar ‘20, who attended the run for the first time this year, explained, “I ran because I felt like it was my responsibility to help the cause.” Allen Zhu ‘18, Junior Class Vice President, exclaimed, “The run is a really great way to have fun with your friends while supporting a good cause.” Most of all, the Run for FOP Research is about helping others in the community, whether they be from the past or present. Rather than getting things out of the community, it’s about putting things in and giving back.