RFA - Desmoid Tumor Research Foundation

Together We Will FUND A CURE

Stay tuned for information about our 2023 RFA event!


RFA Virtual Challenge (June 6 – September 25, 2022)
RFA Virtual Challenge Ceremony (Late September 2022)

The 2022 RFA Virtual Challenge was an opportunity for participants to raise funds for desmoid tumor research by supporting the DTRF. This virtual campaign, ran from June to September, culminates in a LIVE online ceremony at the end of the DTRF Together We Will Weekend (Sept. 23- 25) celebrating the community with speakers, awards, and patient and team spotlights!

“I have challenged myself to climb a cumulative 16,404 ft in elevation… and also to raise that same amount in donations for DTRF… Together, we are increasing awareness about this disease and helping others to find the cure!” ~ Dana



Once again, “Challengers” are encouraged to go the #DistanceforDesmoids by setting an ambitious but achievable step or mileage goal to reach by September 26 (e.g., 10,000 steps, 200,000 steps, 10 miles, 100 miles, etc.). You can reach your distance goal in any way that physically works for you – walking, running, rolling, hiking, cycling, swimming, or even hopping! Match your physical challenge with a fundraising goal of $300+. If you’re extra motivated, feel free to create your own unique, creative challenge like some of last year’s Challengers (scroll down for examples)!

Track your progress with your smartphone (e.g., Apple: Health app, Android: Google Fit app, etc.), an activity tracker (e.g., Fitbit, Apple Watch, etc.), or the old fashioned way – by hand! Along the way, take photos and videos to post updates on social media and your fundraising page so your network can follow your progress and get inspired to donate.


When you register for the Patient Meeting Webinars, you will automatically be registered for the RFA Virtual Challenge at the same time. After registering, here are your next steps…

  1. Check your email to claim your individual online fundraising page.
  2. Choose your step/mileage goal (or other creative challenge – scroll down for ideas) and set your fundraising goal.
  3. Customize your fundraising page and share it, along with your Challenge and story, on social media and via email. Your donors are your teammates, so ask loved ones to join your team by making a gift, OR to become Challengers themselves. IMPORTANT: Learn how to automatically publish your RFA fundraising page as a Facebook fundraiser. We’ve heard that this has been a game changer for fundraisers!
  4. While working toward your goal, take photos and videos and post progress updates on social media and your fundraising page to inspire donations!

*Scroll to bottom for virtual fundraising tips & tools*



Virtual fundraising is more fun – and successful – when we do it together! That’s why we created the RFA CHALLENGE CHAT, our private, accountability Facebook group *JUST* for Challengers to motivate, support and connect with one another throughout the campaign. This upbeat, motivational group is your own personal cheering squad!



Last year…

  • DeAnn rode 2,100+ miles “to Philly,” on her stationary bike, recruiting donors as her team members and sharing a U.S. map showing her progress.
  • Dana did a 5K hike in elevation change (16,404 feet) using hand crutches, and used that as her fundraising goal of $16,404. She shared photos and videos of her journey.
  • Bri walked a mile for every $100 donated. She shared photos of herself with loved ones who joined her.
  • Natalie walked a 5K for every $200 donated.
  • Lynne vowed to shave her head and donate her hair if she reached her goal of $5,000. Although she didn’t hit her goal, she did inspire loved ones to give.
  • Lisa created a fundraising page for Desmoid United UK, and worked with her community to hit their fundraising goal of $1,000.
  • Margie encouraged friends and family to do their own 5Ks at home and to make donations to match them.
  • Jackie shot a wacky lip sync video for every $200 raised and shared the videos online.

I participate in RFA to help support the research that is underway in finding treatment options for patient and their continual effort in answering the question, “Is there a cure for this disease?” ~ Brianna



The following RFA Virtual Challenge Awards will be presented LIVE at the RFA Virtual Challenge Ceremony in late September…

  • 2022 Top Fundraiser Award – Fundraiser with the highest online fundraising amount as of Sept 23 at midnight ET

  • 2022 Memorial Award for Team Participation – Fundraiser with the most donors (team members) as of Sept 23 at midnight ET

  • 2022 Jeanienne Palmer Memorial Award for Greatest Team Spirit

  • 2022 Spencer Black Memorial Award for Most Creative Personal Challenge

  • 2022 Richard Firely Sr. Care Partner of the Year Award – No eligibility requirements (Nominate your care partner here by Sun, Sept 18 at midnight ET!)


To qualify for these awards (*except the Caregiver Award*), you must:

      • have a customized 2022 RFA Challenge fundraising page

      • have at least two other teammates (donors)

      • have raised at least $250 by Fri, Sept 23 at midnight ET



We will be thanking our Milestone Challengers with prizes all summer long:
1st MILESTONE: Raise $250 by June 30th at midnight
Prize: 1 DTRF brandana
2nd MILESTONE: Raise $500 by July 31st at midnight
Prizes: A DTRF wheat straw set, 5 awareness bracelets
3rd MILESTONE: Raise $1,000 by August 31st at midnight
Prizes: A DTRF wheat travel mug, a straw set, 10 awareness bracelets, 1 challenge coin
4th MILESTONE: Raise $1,500 by September 23rd at midnight
Prizes: A DTRF light up bouncy ball, a DTRF fabric headband, 15 awareness bracelets

“This fundraiser has given me so much joy and empowered me through my diagnosis.” ~ Natalie


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