While on the ride, I will be putting my background in photography to use by capturing the portraits and gathering the stories of fellow FAP and desmoid tumor patients for MY TRIBE. These photos and stories will be continuously added. With rare diseases like FAP and desmoids, many patients never have an opportunity to meet even one other person with the same diagnosis, and sharing survivorship stories online is a critical way for patients to connect and share hope.

CARREEN. FAP/GARDNER’S SYNDROME.DIAGNOSED AT 12. COLORADO.

I was 4 days old in July, 1980 when my adoptive parents picked me up at the hospital in Salt Lake City and brought me home. They had gone through an attorney for a private, closed adoption and knew next to nothing about my family history. When I was approximately 17...

KIM. DESMOID TUMORS. DIAGNOSED AT 36. ILLINOIS.

Little did I know my dad’s announcement would alter my life so much.  When I was five years old my father was diagnosed with Familial Adenomatous Polyposis (FAP). After being diagnosed with FAP, my dad had surgery for a colectomy.  They took biopsies from several...

ANNABELLE. DESMOID TUMOR. DIAGNOSED AT 2. ILLINOIS.

Hi, my name is Annabelle.  I am 4 and half years old and I have Aggressive Fibromatosis, also known as Desmoid Tumor, in my right forearm.  My mom tells me that I have had my tumor since I was born, but since I can’t remember back then I’ll have to take her word. ...

KIM. FAP. DIAGNOSED AT 13. ILLINOIS.

Little did I know my dad’s announcement would alter my life so much.  When I was five years old my father was diagnosed with Familial Adenomatous Polyposis (FAP). After being diagnosed with FAP, my dad had surgery for a colectomy.  They took biopsies from several...