Mountainside resident brings awareness, advocates for the victims of little-known, crippling disease

Photo Courtesy of David Forshtay
Joseph Hollywood, 10, left, of Bridgewater and Sophia Forshtay, 21, of Fort Lee with Mountainside resident Gary W. Whyte, who advocates on their behalf. Hollywood and Forshtay have been diagnosed with FOP, a disease that turns muscle into bone.

MOUNTAINSIDE, NJ — The efforts of one Mountainside man have made significant strides in improving local awareness and research funding for a rare disease. Approximately one in 2 million people are diagnosed with fibrodysplasia ossificans progressiva, or FOP, which turns muscles and soft tissues into bone.

To raise funds, Whyte has founded an annual comedy show, currently in its 17th year. The next one is scheduled for March 3, with details forthcoming.

“All of the money we raise goes directly toward purchasing equipment needed by the FOP research lab at UPenn that enables them to do what they do best, and that is to try and find a treatment and or cure for FOP,” Whyte told Localsource.

Gary W. Whyte’s advocacy on behalf of FOP research and awareness started 16 years ago, when he attended a fundraiser in Summit and heard Frederick Kaplan, a researcher from University of Pennsylvania, speak about the disease. FOP progressively locks joints in place, eventually leading to immobility.

Of an estimated 3,300 reported cases worldwide, 13 are found in the Tri-State Area, including seven in New Jersey.
At that fundraiser Whyte committed himself to helping those diagnosed with the disorder and, in 2002, Whyte and his son Eric, now 24, instituted their FOP Awareness Initiative.

The Whytes wrote to all 566 New Jersey mayors, informing and educating them about the disease and asking them to consider passing a proclamation or resolution urging continued research of FOP and promoting its awareness.

“Since June of 2017, I’ve attended 40 meetings in towns throughout Bergen, Burlington, Cumberland, Hunterdon, Morris, Ocean, Sussex, Union and Warren counties,” Gary Whyte told LocalSource on Oct. 22.

“I start off by telling the mayor and governing body about FOP and then about our FOP Awareness Initiative and then top it off by asking their support in adopting a resolution or a proclamation.”

According to the International FOP Association, which provides updates for research conducted on the disease around the world, the organization’s ultimate goal is to develop treatments and, one day, a cure.

To date, Gary Whyte has now convinced 529 mayors to issue proclamations or resolutions that stress awareness and continued support for FOP research.

“I have made it a personal goal to speak about FOP and to accept the mayor’s proclamation or resolution in a town, in each of the state’s 21 counties,” Gary Whyte said. “I have been able to achieve that in 20 out of 21 counties so far, with Cumberland County remaining.”
Each year, UPenn researchers send the Whytes a list of equipment they hope to acquire in order to advance their research. The proceeds of the annual comedy event go to this research effort.

Throughout his 16 years of advocacy, Gary Whyte’s work has received state and national recognition. He has received 10 notable medals and honors, from the 2007 United States Presidential Call to Service Award for Volunteerism by President George W. Bush to the 2017 New Jersey Governor’s Jefferson Award.

“It’s never about receiving awards for what you’re passionate in doing, but when it’s bestowed, it’s an extremely rewarding and gratifying experience,” he told LocalSource.