Fibrous Dysplasia, about.

About Billy


Billy, age 9, has a bone disease called fibrous dysplasia that causes pain and progressive disability (he uses a walker and wheelchair). Since Billy’s diagnosis in 2006, we have worked to raise money for the MAGIC Foundation and Fibrous Dysplasia Foundation.


After watching Billy suffer with much bone pain, we launched a research fund with Dr. Patrick Mantyh at the University of Arizona to work on the bone pain part of fibrous dysplasia. This fund will pay for research to find better treatments or a cure for the bone pain in time to help Billy and kids like him.


Fibrous dysplasia (fragile bones) is caused by a chance mutation in GNAS coding for the protein Gs alpha. The Gs alpha is constantly on (like a jammed accelerator) – this causes over-production of several hormones and abnormal bone growth.


For these bones there is no treatment outside of surgery which often fails. Pain is treated with bisphosphonate infusions – a drug famous in the news for causing osteonecrosis of the jaw and other undesirable side effects. Narcotics are sometimes an option, but no parent really wants his or her child functionally dependent on narcotics on a long term basis.


No one really knows why or how the fibrous dysplasia is painful. Craniofacial fibrous dysplasia is particularly challenging.


Dr. Patrick Mantyh is ready and willing to take on bone pain related to fibrous dysplasia. He is the smartest bone pain researcher in the USA (maybe the world). Just takes funding.