Team FD (Fibrous Dysplasia)

Team FD (Fibrous Dysplasia) Giving Page

Fred and Cindi Levin started this team in 2015 on behalf of their amazing 23-year-old daughter Carly who has been bravely battling Fibrous Dysplasia (FD) in her hip and femur for the past 10 years. At 13, Carly was an active teenager and competition dancer when she was diagnosed with this rare and incurable bone disease after fracturing her hip. Please help Carly and the thousands of children and adults afflicted with FD. Many of them suffer with FD lesions (benign tumors)  in various parts of their bodies, including their face and skulls, causing debilitating pain and disfigurement. Others also suffer from endocrine abnormalities called McCune-Albright Syndrome (MAS). Your contribution to our team will bring us one step closer to beating this terrible disease.

Click here for more information on Fibrous Dysplasia and the Fibrous Dysplasia Foundation.

Donate to one of the Team FD (Fibrous Dysplasia) campaigns, or start a campaign of your own! All donations are DOUBLED by the University of Pennsylvania. Together we can fund meaningful research and move toward answers and a cure. #CureFDMAS #ItTakesAVillage

Donate to a Team FD (Fibrous Dysplasia) campaign:

Team FD (Fibrous Dysplasia) Giving Page

Fibrous dysplasia (FD) is a rare bone disease that can affect any bone in the body. Bone-forming cells fail to mature and areas of healthy bone are replaced with this fibrous tissue. The fibrous areas are referred to as lesions or benign tumors. The severity of the disease covers a wide spectrum. It can affect a single bone and go unnoticed for years or can affect multiple bones or virtually every bone, start very early in life, and result in significant physical impairment, deformity and severe bone pain. FD can also be associated with birth marks (cafe-au-lait spots), and a number of endocrine problems such as precocious puberty, hyperthyroidism, low blood phosphorus, and excess growth hormone. When this occurs, this is known as McCune-Albright syndrome (MAS). The cause of the gene defect in FD/MAS is unknown, but the defect is neither inherited from the person’s parents, nor passed on to the person’s children. When the long bones (the bones of the legs and arms) or flat bones (ribs and pelvis) are affected, the bones weaken, may bow, are often painful, and will frequently fracture. Affected bones in the skull often expand, may cause disfigurement and, again, are often painful. There is no cure for FD, but there are treatments for the various problems associated with it. Surgery remains the mainstay of treatment for the long bone disease and can require numerous surgeries especially in growing children. Surgical treatment is complicated and is best performed by surgeons with experience with FD. Medications known as bisphosphonates (pamidronate (Aredia), zoledronate (Zometa), etc.) have been shown to be effective in relieving pain in some individuals, but these drugs also can have significant short term and long term side effects since they often need to be administered with the same high frequency and dosages given to cancer patients. Other medical treatments for FD bone pain currently being investigated at the National Institutes of Health include denosumab and tocilizumab. For more information, please contact the Fibrous Dysplasia Foundation https://www.fibrousdysplasia.org/