2020: What A Year!

In January of this year I wrote a blog post reflecting on my first days at the Sarcoma Foundation of America (SFA) engaging with the sarcoma community. I wrote at the time about the impression the advocates made on me as I heard the stories they shared at the December 2019 FDA Oncologic Drugs Advisory Committee meeting. I wrote then:

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 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.

I had no idea what 2020 would bring. Now, as I reflect on the past year (and what a year it has been), those words could not ring truer. This past year has been challenging, educational, inspiring, and has brought constant change.  But most important, I could not have asked for a better start to my time at SFA.

Certainly, it has been difficult to join an organization, try to learn and lead during an unprecedented (during my lifetime) pandemic. But the overwhelming support for the work of SFA from the community has been amazing. It has lifted the staff and gave us confidence in times when we were not sure how much research we would be able to fund in 2021. The response to the Race to Cure Sarcoma events, especially the July virtual race, blew us away. The dedication of so many, even while navigating through this same pandemic, gave us the drive to continue to focus on our mission to support sarcoma patients, survivors, and loved ones. We cherished the stories shared with us by so many and they provided the motivation to figure out new ways to achieve our goals so that we could continue to fund lifesaving research. Again, a striking reminder of the power of patient advocacy.  

Although, we did not get to accomplish all of the things we had planned, we did accomplish a lot. We had time to focus more on our internal operations and infrastructure. We added key staff positions, building a stronger foundation to lead and support the sarcoma community. We asked the community for feedback on what SFA can do to better support patients and survivors. And we were able to offer important education webinars for the sarcoma community. We celebrated SFA’s 20^th anniversary with you, and we awarded over $1,000,0000 in research funding.

On a not so serious note, the staff mastered working from home but staying connected, where to find the best work-from-home attire, kindergarten zoom virtual school, high scoring “Room Rater” backgrounds, and rejoiced in the animal kingdoms in our own backyards- staff saw bears, foxes, deer, an eagle, hawks, and the friendly gopher who came out at the same time each day to get food with the babies in tow.

Under the circumstances, not a bad year.

Unfortunately, though, the pandemic impacted sarcoma research and patients. Research was put on hold, patients were unable to continue care or join clinical trials, and too many lives have been lost. We received requests for extensions on grants because researchers were simply unable to access their labs. This has a direct impact on the lives of sarcoma patients and highlights the importance of our work.

Over this past year, I have often thought about the stories from the sarcoma community, the survivors, and the loved ones that were lost to this terrible disease. I often visit the SFA Sarcoma Tribute Wall and follow many sarcoma Facebook groups. I read the celebrations and the disappointments, never forgetting my personal experiences with cancer, never forgetting the day we were told there was nothing else that could be done. I carry these things with me every day. While there are many takeaways from 2020, the ones that resonate the most are inspiration and resolve.

In 2021, SFA will continue investing in much needed sarcoma research – the kind of research that can 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.  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.

We are going to partner with patient advocates, leverage research collaborations, share important information with the sarcoma community, create more awareness, and advocate for the needs of sarcoma patents.

Yes, SFA celebrated its 20th anniversary this year, but there is definitely more to be done.  From all of us at SFA, we hope you will continue to stand with us as we work to find the cure in our time.