The Power of the Sarcoma Community
By Brandi Felser, Executive Director
In my very first days on the job as the new Executive Director of the Sarcoma Foundation of America, I had the opportunity to experience first-hand the power of the sarcoma community.
For the first time ever, the US Food and Drug Administration (FDA) was reviewing for approval a proposed drug for the treatment of epithelioid sarcoma, a particularly rare and aggressive subtype of sarcoma. Epithelioid sarcoma has few effective treatment options and patients are often left with little or no hope for long-term survival.
As a part of the approval process, the benefits of the potential therapy had to be weighed by an FDA advisory committee. Though I had just come on board, I stood before this panel on behalf of the SFA to urge approval of the new treatment option. My comments spoke of a community that has been left behind and is in desperate need for a therapy that would give them a fighting chance. I believe that this statement made an impact on the committee and helped to contribute to the panel’s recommendation to approve the investigational drug. In fact, I have no doubt that SFA’s reputation as a trusted and strong advocate for sarcoma patients and their families provided strength to the effort.
What made the experience especially impactful was that I got to meet sarcoma survivors and caregivers and hear their emotional and inspiring testimonies. Each of their stories was unique, yet all carried the same message: they were given few options, but an experimental therapy was giving them a chance at life. They stood before that committee, not just to fight for their own needs, but to speak on behalf of an entire community that often feels forgotten and alone. Their words certainly made an impression on the advisory panel.
They also made an impression on me. As someone personally affected by cancer and a seasoned cancer advocate, I am no stranger to the needs of cancer patients, survivors, and caregivers. But seeing them stand before a committee of oncologists and FDA officials to share their very personal stories served as a striking reminder of the power of patient advocacy.
I could not have asked for a better start to my time at the SFA. This experience will help shape my leadership of the organization as we work to harness the power of advocacy to make changes for the thousands of sarcoma patients who need better therapies and new treatment options. The SFA has a long history of investing in much needed sarcoma research – the kind of research that can help lead to discoveries that will generate potential new treatment options – and we will continue to lead the effort to support and fund innovative research projects. The SFA will also continue to speak out on behalf of the sarcoma community to create more awareness, encourage more research, and influence those whose decisions and policies impact sarcoma patients.
I look forward to leading the SFA and to serving along side all of you as an advocate for this community.
More about Brandi can be found at www.curesarcoma.org/sfa-announces-brand-felser-executive-director/.