Merritt Engel published Regeneron Shares Updates on its Ongoing FOP Research Program in FOP News 2017-03-09 16:43:53 -0500
Potentially Promising Treatment for FOP
We are pleased to share a few exciting updates on our ongoing work to help improve the lives of people with FOP.Read more
WINTER SPRINGS, FL - Researchers at the University of Pennsylvania School of Medicine recently announced the discovery of the “Skeleton Key,” or FOP gene, a anomaly that causes the disorder Fibrodysplasia Ossificans Progressiva, or FOP.
Nowhere has this news been better received than at the International FOP Association, or IFOPA, the nonprofit organization dedicated to supporting families dealing with the rare genetic condition. FOP, also known as Myositis Ossificans Progressiva, causes bone to form in muscles, tendons, ligaments and other connective tissues, ultimately creating an extra skeleton that immobilizes the joints of the human body.
“One of our key goals as an organization has always been to find the ‘Skeleton Key' that will unlock the mystery and open the door to a cure for FOP,” said Jeannie Peeper, President and Founder of the International FOP Association (IFOPA) and sufferer of FOP.
“This is monumental for us and our members. It's a dream come true for all of us.”
Established in 1988 by Peeper, the IFOPA is a nonprofit support organization for families dealing FOP. The group's mission is to advance and support FOP research, education and advocacy, while giving its membership a means to help cope with the disease, both privately and publicly. Its membership currently spans 52 countries worldwide and includes FOP patients, as well as families, friends, medical professionals and more. The organization connects and shares information and ideas with its members through newsletter publications, a website and an online support newsgroup, FOPonline, among other means.
“Families have been working hard to provide funding for research in hopes of finding this mysterious FOP gene for 15 years and today that reality is here,” said Amanda Cali, Chairman of the IFOPA.
“We now will begin the long search for a treatment and cure with the same enthusiasm. We will not rest until the day a cure is found.”
To help support the FOP research conducted at the FOP Research Program at the University of Pennsylvania, the organization holds a number of fundraising events throughout the year, like the Spencer Man Memorial Drawing, an annual fund drive and the sale of FOP Awareness Bracelets.
In addition, FOP families across the globe support research effort by running barbecues, picnics, 5K runs, concerts, spaghetti dinners, garage sales, and golf outings, to name just a few.
The organization expects fundraising efforts and membership numbers to increase dramatically as a result of the discovery of the “Skeleton Key.”
“FOP research has been supported by the families in the FOP community at a rate of about $500,000 annually," explained Linda Daugherty, Executive Director of the IFOPA.
“It is an unprecedented and impressive effort that these families make year in and year out.”
One of the Association's primary initiatives will be its upcoming Fourth International FOP Symposium, to be held in August of 2007. The event will gather FOP-affected families and medical professionals from around the world under one roof and allow them to share stories, participate in clinics and gain insights and support into the condition. The last Symposium was held in Philadelphia in 2000.
# # #