Five and Twenty-Five: Reflecting and Looking Ahead
Brandi Felser
Next year, the Sarcoma Foundation of America will celebrate its 25th anniversary. It is amazing to reflect on how far SFA has come – an organization that started by three passionate Founder’s thanks to an encounter at a medical meeting. Now, the leading private funder of research in the sarcoma community, the principal organization representing sarcoma patients’ voice on Capitol Hill, and the largest and most comprehensive patient advocacy organization representing all sarcoma patients regardless of subtype.
I joined SFA five years ago this month, but my personal patient advocacy journey started 14 years ago when my mother passed away from cancer. That is when I decided to turn my passion and personal experience into helping others. Then in 2019, just before joining SFA, I lost my father who also had cancer. I was both a primary care partner and a daughter helping her parents navigate a disease and a journey none of us understood.
I have been in the role of care partner, a daughter who lost her parents, and a person who had to quickly learn how to advocate for care, manage a health care system, make decisions with limited information and frankly, not know which decision was the right one. We experienced misdiagnosis, wait and watch until the waiting was too late, searching for answers and other options, and the overwhelming feeling that we did not know which way to turn. I realized then that I did not want anyone else to experience what my family had gone through.
Most importantly, the thing that sticks with me the most is the feeling that there was so much we did not know. A not uncommon experience in sarcoma – a devastating diagnosis coupled with a rare cancer with little information. Something I hear from people time and time again. And I have committed to doing all I can to ensure that SFA supports the sarcoma community so no one else has to share that feeling. I have spent time thinking about my journey and SFA’s 25th anniversary.
I thought how important SFA’s contributions have been over the years. And I wondered where sarcoma patients would be today if SFA did not exist. It is difficult to harness the impact SFA has had. It is inspiring to consider the impact we’ll have in the future. Your support continues to be an important catalyst to SFA’s ability to advance our mission and save lives. You may have noticed our logo and website look a little different. Over the last five years, I have engaged with the Board and staff on strategic planning work. Looking toward the future and mapping out our impact and role in the sarcoma community.
Our Board and staff have spent time reflecting on our accomplishments and planning ways SFA will expand our impact. What you see is a recognition of our leadership role in the sarcoma community and an outward representation of our commitment to expand our work to realize a future where no one else dies from sarcoma. Three months after I joined SFA, the world was devastated by the COVID-19 pandemic. And I was wondering how I was going to lead this amazing organization through one of the worst times in recent history so that we could continue our mission on behalf of people affected by sarcoma. Now, nearly five years later, SFA’s impact and growth has been remarkable. And that is because SFA has some amazing supporters. Your support has brought us to where we are today – the first line resource for all things sarcoma. Thank you for joining us, thank you for supporting us, thank you for investing in us. More importantly, thank you for your commitment to the many children and adults diagnosed, living with, and surviving sarcoma. I look forward to our continued work together to reach our shared goals. Together, let’s change the world for people affected by sarcoma. For me, this is personal.