Joe’s daughter, Ashley, was diagnosed with FOP at the age of 12. From the beginning, Joe devoted his efforts to fundraising and raising awareness of FOP. Multiple events have been held in honor of Ashley by Joe and his family, as well as the community in which they live, bringing in nearly one million dollars to support FOP research at the University of Pennsylvania, as well as the FOP Connection Patient Registry. 

Joe practices law in New York and focuses in areas of technology and government. As a board member, Joe’s experience allows him to look at issues objectively and provide an opinion which takes into consideration legal, ethical and policy concerns. 

Joe wants to first and foremost provide the support necessary so that academic researchers and pharmaceutical companies have the resources needed to find treatments and a cure for FOP. He believes there are no incurable diseases, only diseases for which we have not yet found a cure, and FOP is no exception. Continued research provides the hope for Ashley and all those living with FOP so that one day they will not have to fear what tomorrow will bring.