Dear Editor: I am conducting an awareness campaign for a rare disease that is afflicting 14 children in New Jersey. There is a fundraiser coming up next week. I approached all 566 New Jersey Mayor’s and asked them to adopt either a ‘ Proclamation’ or a ‘ Resolution’ on behalf of FOP research and awareness and their support for the United States Bone and Joint Decade 2002-2011. We are still trying to get the support of the remaining 262 Mayors to reflect 100% support from across New Jersey.
For people with F.O.P., there is light at the end of the tunnel.
In terms of that old saying of whether you want the good news first or the bad news, I’m opting to tell you the bad news first. Fibrodysplasia Ossificans Progressiva, or better known as FOP, is a horrific disease. Tendons, ligaments and skeletal muscle painfully transform into bone and sometimes lock joints overnight. These new bones result in the formation of a second skeleton within the confines of the normal skeleton and most often immobilizes the person. FOP afflicts 14 people in the State of New Jersey and there are about 220 confirmed cases in the United States.
It’s estimated that there are about 2,500 cases of FOP worldwide. Because the disease afflicts so few people, it’s classed as an ‘ Orphan Disease ‘ and receives little attention in the areas of awareness and funding.
About 15 years ago at the University of Pennsylvania, Dr. Fred Kaplan started the F.O.P. Research Lab and in conjunction with Dr. Eileen Shore and others, they set out to unlock the mystery of FOP. FOP families and friends throughout the country have been sending money to the University of Pa. FOP Research Lab in hope that one day a cure could be found.
Now for the good news. In our area, the communities banded together for Whitney Weldon who was diagnosed with FOP at age nine and is now 13. A single CD was made and sung by Kassy Ciasulli and titled ‘A Prayer for Whitney’ and thousands of copies were sold. Thousands of green FOP wristbands were sold. Weldon material concrete mixers and dump trucks were marketed.
Annual golf outings and comedy shows brought in hundreds upon hundreds of thousands of dollars over the past five years. In fact, under the direction of Joseph Hill, the Community Presbyterian Church in Mountainside will host ‘An Evening of Music ‘ on Saturday, May 20th at 7:30 p.m. and any and all good-will proceeds that are received that evening will be donated to FOP Research at the University of Pa. Perhaps you will consider joining us that evening as we sit back, relax and enjoy the music and talent of these performers.
Now for the really good news. On Monday, April 24, 2006 researchers at the University of Pa. went public in their announcement that they discovered the mutant gene that causes the body to form a second, renegade skeleton. Scientists have discovered the gene that causes F.O.P. ! ! ! I cannot miss the opportunity to not only “thank ” Dr. Kaplan and Dr. Shore and their amazing staff of researchers, but it’s equally important to “thank ” the countless number of people who support all of our fund-raising efforts.
For further information about how you can help, please contact me, Gary Whyte of Mountainside at 718-442-7525 or by email at gwhyte@bonita.com.
Gary Whyte