The Weldon FOP Research Fund

Our Daughter Whitney

Dearest Friends,

Seven years ago, our life changed forever. Our eight-year-old daughter, Whitney, began having terrible pain in her neck and a lump growing on her back. April 3, 2001 brought us news the she had an extremely rare connective tissue disorder called Fibrodysplasia Ossificans Progressiva (FOP). FOP is a genetic condition characterized by the abnormal growth of bone in soft tissue. FOP is the only known disease where one organ can transform into another, where muscles, tissues, and ligaments develop into bone. 

Her body is slowly failing her, prohibiting Whitney from participating in physical activities for fear of a slight trauma that will trigger more bone growth throughout her body. Yet, the happy-go-lucky girl that enjoyed numerous sports, swimming in the ocean, and playing the trumpet has not lost her beautiful smile, her witty sense of humor, or her determination to succeed with every new adaptation. She laments the loss of each activity, but always picks herself up to face the next challenge.

With only 500 confirmed cases worldwide, FOP is a rare disorder. Fortunately, FOP research led by Dr. Frederick Kaplan and Dr. Eileen Shore has lifted our spirits and our hopes by discovering the one in 6 billion amino acid substitutions that triggers this disease. This breakthrough has opened up an exciting new area of research. The Center for Research in FOP and Related Disorders at the University of Pennsylvania is currently genetically engineering mice with the hope of finding therapy and treatment options in the future. In addition to finding a cure for FOP, this research has major implication for many more common conditions including the treatment of spinal cord injuries, osteoporosis, damaged heart valves, and stopping the complication of extra bone growth after hip replacements.

Please read the personal letter from Dr. Frederick Kaplan, it clearly shows his compassion for the children and dedication to help find a cure to this devastating condition. I believe he will change the world.

Please consider investing in this revolutionary research. Your financial support to The Weldon FOP Research Fund (www.weldonfop.org) can help find the cure to this insidious disease. For every dollar the fund raises 95 cents goes directly to Dr. Frederick Kaplan and his team of dedicated scientists.

Love,

Hillary and Bill Weldon