Ciattarelli bill establishes Awareness Day for rare childhood disease

Most sufferers are under the age of 10 when they develop Fibrodysplasia Ossificans Progressiva

TRENTON, N.J. – Assemblyman Jack Ciattarelli is raising awareness for a very rare genetic condition that causes muscle tissue to turn into bone. His resolution designates April 23 as Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day.

“I first learned about this disorder when I met Joey Hollywood, an inspirational young guy from Bridgewater who has become the face of the disease in our state,” said Ciattarelli (R—Somerset). “University of Penn researchers identified the FOP gene on April 23, 2006. That’s why we want to make that date Fibrodysplasia Ossificans Progressiva Awareness Day.”

The disorder is generally diagnosed in children younger than age 10. The progressive symptoms include mutation of the body’s connective tissue and muscle causing joints to become frozen and producing a “second skeleton” of bone-like growth.

“Designating a permanent awareness day is a crucial next step,” said Gary W. Whyte, an advocate dedicated to educating people about FOP and raising money for research. “I have been spreading the word and fundraising for the past 16 years, but FOP is still a relatively unknown disease.”

The condition is unpredictable, and even a seemingly minor injury – a pulled muscle or a sprained ankle – can trigger the development of painful and permanent “bones.” Even surgery leads to more severe reactions from the body rather than bringing relief to the patient.

“Penn University’s research has led to some exciting developments for treatment,” said Ciattarelli. “Public awareness will add momentum to the effort, helping extend the lives of sufferers and maybe eventually leading to a cure.”

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