RIP Marty O'Brien

My name is Marty O'Brien, and I was born with the genetic disorder Familial Adenomatous Polyposis, or FAP. I have been battling this disease since my diagnosis at Massachusetts General Hospital in 1995. I have an abdominal tumor, called a Desmoid tumor, which has been around unfortunately since 1998. My story sometimes feels too long to tell, but the long and short of it is that I suffer from an orphan disease, meaning it is very rare, and there is not much money abounding for research and treatment. My wife and I been told many times that I have been close to death. Too many for me, thanks! 

I have been cared for at three major teaching hospitals, yet have never had a specialist who actually actively researches and treats FAP and Desmoid tumors. I have an opportunity to meet the only doctor who *does* include my disease in his list of specialties. He is Dr James Church in the colorectal surgery department at the famous Cleveland Clinic. We hope to raise enough money to help with lodging, and transportation to and from Cleveland, OH, as well as any medical costs I will incur as part of the trip. Any help will be so gratefully appreciated. ☺