Bingo nets more than $80,000 for Research Into Rare Genetic Disorder

It's rare that a 4-year-old raises tens of thousands of dollars or draws nearly 1,ooo people to an event. But Joshua Scoble of Emmaus is no ordinary boy.

Afflicted with a rare genetic disorder called Fibrodysplasia Ossificans Progressive (FOP), Joshua is one of 700 people worldwide – 285 of which are in the United States – diagnosed with FOP. The disorder causes bone to form in muscles, tendons, ligaments and other connective tissue.  Extra bone develops across joints –  a sort of bridge – restricting movement and creating a second skeleton that imprisons the body in bone.

On March 29 about 1,000 bingo players packed into the Agri-Plex at the Allentown Fairgrounds for their chance to win one of the many donated prizes and to help raise funds for Joshua's Future of Promises, a non-profit organization set up by Joshua Scoble’s family in an effort to raise awareness and funds for FOP reasearch and to help support families afffected by FOP.

"Bingo for a Cure" brought in more than $80,000. Beyond the bingo tournament, 130 baskets were raffled off to the bingo players, and $8,000 collected for a 50/50 drawing. 

The organizers of Bingo for a Cure thank the entire community for its support.  All the volunteers, from those who donated prizes and food to those who sold tickets and baked for the bake sale, made Bingo for a Cure a great success. 

The Emmaus Patch first got to know Joshua in January when a pair of documentary film makers from New Jersey decided to focus a school project on Joshua and FOP.

Joshua is an energetic, beautiful 4-year-old boy, who wants to do everything any 4-year-old would do. His movements are becoming more and more limited – the bones in his back and neck have now fused, and he can no longer lift his arms above his head. 

Joshua needs to be extremely careful in everything he does.  Just a simple bump or bruise, common injuries of a child his age, could cause a flare-up of the FOP, which, in turn, will create additional transformation of the injured area into bone. In fact, something as minor as a childhood immunization could cause a flare-up.

FOP affects one in 2 million people.  There are no ethnic, racial or religious patterns. There is no cure or treatment for this disorder.  However, in April 2006, researchers at the University of Pennsylvania School of Medicine, the only laboratory in the United States dedicated to FOP research, announced they discovered the FOP gene.  Treatment, or a cure, could now be just around the corner for all of the Joshuas out there.

Additional Joshua's Future of Promises fundraisers are planned for later in the year. 

• August 6 – Ride for Joshua’s Future of Promises – features motorcycles.  For information contact Lori at jayloriaustin@verizon.net. 
• September 1 through 30 –  Keystone Candle Fundraiser for Future of Promises  – various candles will be displayed and able to order. Information will soon be available at www.JoshuasFOP.com.
• September 18 – Racing for a Cure – will be hosted by Keystone State Quarter Midget Race Club and held on a track behind the Schnecksville Fire Company. For details about the race, visit www.JoshuasFOP.com.