Dakota received her B.A. in biology from Bryn Mawr College in May 2011 and a Familial Adenomatous Polyposis (FAP) diagnosis two months later. Reluctantly, she traded in her post-college job for surgical gowns to have her cancerous colon removed. While working abroad in 2013, she noticed another trick up FAP’s sleeve and was diagnosed with a desmoid tumor. If anything, she says this tumor confirmed that while she hoped to be one in a million, statistically speaking, she’s closer to four in a million. Patient advocacy fills the void left by her colon and her former job title. As the Associate Director of Global Patient Advocacy at BioCryst Pharmaceuticals, she ensures that the voices of rare patients and the nonprofits that serve them are heard and supported. She’s the co-founder of Young Adult Cancer Connection which hosted Cancervention, Philadelphia’s first young adult cancer conference, and the creator of FAPulousTV, the first YouTube Channel dedicated to discussing FAP. Her rarity status came in handy while leading the Community Engagement Team for three years at rareLife solutions. The other diagnoses she contends with include an active chocolate addiction and the travel bug.
“My desmoid diagnosis made me realize that I could not simply put my health challenges neatly in a box and move on. Instead, I was going to have to learn how to live with this disease and in order to do so, I needed to meet others who could relate. The young adult ‘cell mates’ I have connected with are just as responsible as the medical treatments I have undergone for me still being here today.”
