Fibrodysplasia Ossificans Progressiva Fund
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Fundraising goal $30,000.00
Recent donations (6 donations)
Name DescendingX Amount
Ipsen Biopharmaceuticals $5000.00
Lynn Butterworth & John Rendinaro Facebook Fundraising $1826.00
Gretchen Pusch & Richard Bayles $1000.00
Larry & Stacy Mancino $100.00
Dr. Annamarie Horan
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Recent donations
Top donors (6 donations)
Ipsen Biopharmaceuticals $5000.00
Lynn Butterworth & John Rendinaro Facebook Fundraising $1826.00
Gretchen Pusch & Richard Bayles $1000.00
Larry & Stacy Mancino $100.00
Dr. Annamarie Horan
Next
Team #cureFOP's Million Dollar Bike Ride

What is FOP?
FOP is one of the rarest, most disabling genetic conditions known to medicine, causing bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.

FOP is a genetic disease affecting 1 in 2 million people. There are an estimated 800 confirmed cases worldwide, and 285 known cases in the United States. There are no ethnic, racial, or gender patterns.

Currently, there is not a treatment or cure for FOP. Malformed big toes, which are present at birth, along with tumor-like masses that first appear on the head and shoulders of infants and toddlers are highly suggestive of FOP.
What is the IFOPA?
The IFOPA exists to fund research to find a cure for FOP while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide. This is done through programs and services focusing on research, education, support and advocacy.
Ride to #cureFOP!
Join the IFOPA as we participate in the Million Dollar Bike Ride on June 8, 2019! Our goal is to raise $30,000 which will be matched dollar for dollar by the Penn Medicine Orphan Disease Center. The total amount raised will be used to fund brand new FOP research grants. You can participate in two ways:

1. Donate to our team and help us reach our goal.
Simply click the red "Donate" button on the bottom left.

2. Register to ride on Team #cureFOP.
Registration is a two step process:

STEP ONE: Fill out the short form at www.ifopa.org/milliondollarbikeride
STEP TWO: Register for the race at www.alumni.upenn.edu/MDBR2019
Your participation as a rider includes:
  • A race day kit
  • Dedicated support from IFOPA staff
  • Fundraising incentives and team activities
Donation messages
Riding in honor of Ashley Martucci! --Larry & Stacy Mancino
For Penn Team FOP! you Rock! --Dr. Annamarie Horan
For Katherine and Renee! --Beth Howard
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delrossi@upenn.edu | Anne Marie Del Rossi, Director, Data Services | 215.898.3062
2929 Walnut Street, Suite 300 Philadelphia, PA 19104 | Superuser