In-person
2024 Speed Desmoidian-ing Community Networking Event
This special event for patients and caregivers is included when you register for the DTRF Together We Will Weekend!
Use code TWWHOUSTON20 at checkout for 20% off registration!
Don’t forget to register separately for the RFA Walk at the Houston Zoo on Sunday, Sept. 22nd!
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.”
Facilitator
Dakota Fisher-Vance
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.
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The DTRF Newsletter
Join the DTRF community! We carefully curate our bi-weekly newsletter to highlight upcoming events, the latest desmoid tumor progress, research updates, and patient care advances!
Annual Weekend
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.
