By Brandi Felser, Executive Director
Each year, over 16,000 children, women and men are diagnosed with sarcoma and 7,000 lose their lives. Although sarcoma is considered a “rare” cancer, it is not rare to the approximately 50,000 people who are living with the disease. It is not rare to the mothers and fathers, families and friends, who have lost loved ones. Their experiences are, unfortunately, not rare.
Certainly, the adjective rare sets sarcoma apart. It means that fewer people are diagnosed with the disease. But the rare designation has more implications. It means that treatment options and research funding has lagged behind. It means the sarcoma community is smaller, with less patients to power clinical trials. The community has had to work harder to raise awareness and advocate for necessary reforms to ensure sarcoma is not left behind as novel advancements are made in the treatment of other cancers.
Sarcoma is a unique cancer to be sure. Sarcoma has over 50 validated histologic subtypes, with the potential for the existence of over 100 subtypes. This means that an already small population is further broken down into increasingly smaller subsets furthering difficulties in drug development and adequate research funding. And at times, it can make it difficult to bring the collective sarcoma community together with one voice.
The month of July, Sarcoma Awareness Month, is a time for the community to join forces, to unite and raise awareness about the disease. Importantly, it is also a time to unite and work toward more and better treatment options for all sarcoma patients.
But not just this month. Every month.
Although rare means there are less voices, it does not mean that collectively our voice is not powerful. It does not mean that we do not have the power and strength as a community to bring about increased awareness, more and better treatment options, leading to a cure for sarcoma.
As I participate in my first Sarcoma Awareness Month at SFA, I am humbled by the sarcoma community’s determination and courage. I look forward to working together, this month, and every month, to ensure patient’s voices are represented and to raise awareness about sarcoma, a unique cancer. Also, to work toward more and better treatment options and research that will ultimately end this disease.