This week registration has opened for the annual DTRF Patient Meeting and Running for Answers 5k. As a desmoid patient, these are some of the most important fundraising events of the year!
I discovered my desmoid over five years ago. It’s been a long five+ years filled with surgery, endless treatments, intense testing, countless doctor appointments, and almost constant worry. I’ve been on my current chemotherapy regimen for over one year now and I pray and HOPE this drug will finally be my ANSWER.
Throughout all of this, I continue to rely on the DTRF and the desmoid patient community, for information, support, and strength. And I want more than anything to wipe these tumors off the map! The DTRF is the only organization in the U.S. dedicated solely to funding research related to diagnosis and treatment of desmoid tumors.As an advocate for the DTRF, I am committed to raising funds to help in the fight! I do this by:
1. Incorporating my desmoid into my daily life.
I am open about my journey with others. I let others see my desmoid vulnerabilities and it brings them into this journey with me. By sharing my story, others come to understand how important desmoid tumor research is to me, and to our desmoid community, and they want to donate and contribute to finding us a cure.
2. Not being afraid to ask, and being creative.
I start fundraising soon after RFA registration opens and I use a variety of ways to reach out. I post my story and fundraising page on my social media accounts, send individual emails, and even hold personalized fundraising events. For example, I sold some of my handmade pottery and donated all proceeds to the DTRF. Other ideas include holding a garage sale or a neighborhood BBQ.
3. Showing my gratitude.
It is of utmost importance to me, to show my appreciation of those who have supported me. There are a variety of ways to do this with the goal being to convey my gratitude and the impact of their contribution. To name a few, I organize a get together for Team Rachel members that travel to Philly for the weekend, I send personalized thank you notes, I share pictures from the patient meeting and RFA weekend, and I tag family and friends on social media as a way to publically recognize their donation. Throughout the years, Team Rachel has become a family, and I hope they know how much they mean to me!