I have been a desmoid patient for 25 years and have had two tumors. I have had two inpatient and dozens of outpatient surgeries, 6 weeks of radiation, three months of chemotherapy and a year and a half of potent anti-inflammatory treatment all told. I have not had any luck in treating the current inoperable tumor in my shoulder.
When I discovered that the Desmoid Tumor Research Foundation (DTRF) had been created, I was overwhelmed with emotion, a mixture of gratitude and hope. I wanted to contribute somehow and my own financial situation being what it is after so many years of medical bills, well, you can imagine. So I took a tip from the fund-raising ideas given on the DTRF’s website and drafted a letter.
I sent this letter to everyone in my address book, family and friends alike.
Within a matter of weeks I had collected over $2200, an amount that would be matched by a corporate donor. I found that when people learned the details of this disease and its conditions and how they exist for a few million of us, they wanted very much to help. Again, my heart is full of gratitude and hope. Making this effort has given me such a boost of morale and energy, to quote the DTRF’s own Jeanne Whiting, “It turns you from a victim to an advocate, and is very empowering!” I will continue to do what I can to raise money to fund research for a cure.