Community connections can be transformative and are essential to the patient and caregiver journey. Our Community Networking Event, held during the DTRF Together We Will Weekend, is a wonderful opportunity to have one-on-one, real-time conversations with fellow patients and caregivers. The event is structured to provide a natural way to get to know other attendees and share experiences by connecting in small groups in a safe and private setting. Event structure has included group conversations and brief, one-on-one conversations (called “Speed Desmoidian-ing”).
We’ve heard many times that the DTRF Together We Will Weekend provides opportunities for patients to feel that they’re not battling this disease alone. Attendees have also told us that our events are the first time they’ve ever met someone else who truly “gets it.”
Dakota Fisher-Vance received her B.A. in biology from Bryn Mawr College in May 2011 and a Familial Adenomatous Polyposis (F.A.P.) 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 F.A.P.’s sleeve and was diagnosed with a desmoid tumor. 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.
Patient advocacy fills the void left by her colon and her job title. She’s currently the associate director of Global Patient Advocacy at BioCryst Pharmaceuticals where 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 F.A.P. Her rarity status came in handy while leading the Community Engagement Team for three years at rareLife solutions and on Horizon Therapeutics’ Patient Advocacy team. The other diagnoses she contends with include an active chocolate addiction and the travel bug.
From our amazing community of supporters
“I loved this opportunity to connect with other desmoid patients and caregivers! I appreciated the conversation prompts, and especially enjoyed having one-on-one conversations with a variety of people.”
“It was so amazing connecting with people. I’m newly diagnosed, and I learned so much from just talking to other patients. It was really incredible, and I will absolutely participate in future sessions and try to get my caregiver to join separately as well.”
“The interaction with other patients and caregivers was a great experience for me as I was diagnosed [recently]. It was heartwarming to be able to talk about desmoid with others that understand what you are going through.”
“I really enjoyed the event and would definitely participate in others. Much needed diaglogue and connection that helps our community. So grateful for this community you have helped to create. Thank you!!”
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The DTRF Newsletter
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Our annual DTRF Together We Will Weekend is a time for patients, family, and friends to connect with each other and participate in informative lectures and roundtables on desmoid tumors and race/walk in our Running for Answers 5K.