|Posted:||April 20, 2018 12:11 PM|
|From:||Senator Lisa M. Boscola|
|To:||All Senate members|
|Subject:||Resolution-Fibrodysplasia Ossificans Progessiva Day April 23 (FOP)|
|In the near future, I intend to introduce a resolution designating April 23, 2018 as “Fibrodysplasia Ossificans Progressiva Awareness Day” in Pennsylvania.
My resolution is intended to raise public awareness about Fibrodysplasia Ossificans Progressiva (FOP) and the current research being conducted into its causes. It encourages the medical community’s continued search for a cure and development of treatment and prevention strategies for FOP and other musculoskeletal disorders.
The symptoms of FOP usually appear in the first or second decade of life, with the majority of patients diagnosed by the age of 10, depriving children of normal development. Most children born with FOP will typically develop extra-skeletal bones at the neck and on the shoulders, arms, chest area, legs, and feet.
Currently, there are approximately 250 confirmed cases of FOP in the United States, with several of those cases being in Pennsylvania - including my 11 year old constituent Joshua Scoble of Emmaus borough, whom was diagnosed with FOP at 3 months old.
Please consider joining me in sponsoring this resolution.
Introduced as SR335