When the diagnosis of Desmoid Fibromatosis came to us, we had no idea what it even was. We were also surprised to learn that the surgeon, one of the best at Grand River Hospital, had some learning to do himself. My biopsy was sent to Mt. Sinai Hospital in Toronto for further analysis, and specialists at Princess Margaret Hospital were also brought in to advise my team of Kitchener-based specialists on treatment options.
While we did our internet research, we discovered that not only is there no local support group, but the rarity of the tumour also means that there is no funding foundation for desmoid research in Canada. The only research foundation is based in Philadelphia, where the Desmoid Tumor Research Foundation hosts an annual patient/caregiver meeting. The meeting is designed to provide desmoid patients with an opportunity to meet others who have the ailment, and to hear from experts on where the current research is going with respect to finding a cure. The patient meeting is then followed the next day by a 5k Run/Walk and Kid’s Fun Walk to raise money for desmoid research.
On October 18, 2015, Peter and Shandi will join hundreds of patients, caregivers, family members and friends in walking 5km in support of the Desmoid Tumour Research Foundation.
We are asking for your support!
Each of us is required to fundraise a minimum of $300 in order to enter the race, which will take us along the Camden, NJ waterfront, overlooking downtown Philadelphia. We want to fundraise that – and more – because we know that every dollar spent on desmoids tumour research is one more dollar towards discovering a cure for this rare and aggressive type of tumour. As such, we have set our shared fundraising goal at $1000. Will you help us reach our goal?
As the patient meeting and race is happening in Philadelphia and New Jersey, we will need to get ourselves there. Despite the low oil prices, gasoline remains pricey, and finding affordable accommodations can be equally as challenging. We have set a goal of fundraising $1000 to cover the costs of our travel to Philadelphia for the event. Will you support us in our effort to get to Philadelphia to participate in this opportunity to raise funds for desmoid research.