Co-Founder
Dakota Fisher-Vance
Dakota graduated from Bryn Mawr College in 2011 with a degree in biology, a fantastic job lined up, and a perceived relatively healthy body (with the exception of her very active chocolate addiction). Two months later after a severe bout of anemia warranting a trip to the ER and an emergency colonoscopy, she was diagnosed at the age of 22 with the rare genetic disease, Familial Adenomatous Polyposis (F.A.P.). F.A.P. increases the lifetime risk of several cancers one of which, colon cancer, she was already in the early stages of developing. Reluctantly, she traded in her post-college job for surgical gowns at the end of 2011 to have her cancerous colon removed. While working abroad in mid-2013, she encountered another trick up F.A.P.’s sleeve and was diagnosed with a desmoid tumor, an even rarer soft tissue sarcoma, which she managed with an oral chemo. If anything, this tumor confirmed that while she hoped to be one in a million, statistically speaking, she’s closer to four in a million! Appalled by the lack of information available on her disease, Dakota created the first F.A.P. geared YouTube channel (FAPulousTV) where she shares the experience and research she’s accumulated with F.A.P. and led the Community Engagement Team at rareLife solutions in an attempt to enable her diseased peers to better advocate for their own healthcare. She continues working in the patient education sector as the Patient Advocacy Manager at Horizon Therapeutics while occasionally putting some literal distance between her and her diagnoses by expanding upon the list of places traversed by her colonless body (which currently includes Croatia, Bosnia, Israel, Indonesia, Thailand, Singapore, Japan, South Korea, France, Spain, Vietnam, and Portugal)!