A Powerful Sarcoma Community

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Throughout 2020, SFA has highlighted patients, survivors, family members and friends on our social media channels, through our newsletters and during our events. We recognize and celebrate the important role sarcoma advocates play in advancing research and awareness that will ultimately benefit and improve the lives of sarcoma patients.

Sarcoma advocates are participating in and hosting events, sharing information, answering important questions through surveys and other projects, collaborating with researchers and industry to advance sarcoma therapies and clinical trials, and making their voices heard on Capitol Hill to advocate for polices that support sarcoma patients.

Advocates like Brendan Locke from Wisconsin who is working with his members on Capitol Hill for a resolution in the Senate designating July Sarcoma Awareness Month and others who work with sarcoma organizations to advocate for important public policies. The many sarcoma advocates that participate in the RTCS events to support research, education and awareness. The overall top teams in 2020 raised over $258,000 to advance the cure in our time:

  • Team Langbein (Chicago)- $170,678
  • Cleveland Clinic Sarcoma Program (Cleveland)- $28,355
  • Team Ryan (National Virtual RTCS)- $23,050
  • Victoria’s Unicorn Warriors (Cleveland) $20, 619
  • Team Joey (Philadelphia)- $15,817.60

Others who use their sarcoma experience and hold their own events or raise money and awareness in creative ways. Advocates like Lisa Lacheny who sells homemade baked goods at farmers markets in memory of her mother Reese Huen sells t-shirts in honor of her friend Jake, Josie Naumowich who was part of our New York Gala and raises money in memory of her father, Jesse Tolkan raises money in memory of her brother and, the Zach Cohen family who host a golf tournament in memory of Zach and donate the proceeds to SFA. Many advocates set up Facebook fundraisers that support research and awareness and there are many, many other ways advocates are using their experience to advocate in ways that are meaningful to them.  

Research advocates that work with organizations like SARC and SFA that participated with industry to advance science. Collaborators like the Cleveland Clinic Sarcoma Program that is a true partner for the Cleveland RTCS event. The University of Maryland who is partnering with SFA to create a public service announcement to increase awareness about sarcoma. Our New York Gala honorees Like Dr. William Tap at Memorial Sloan Kettering who is a leader in the sarcoma space to make life better for sarcoma patients and nurse Robin Rawlins-Duell who cares for sarcoma patients.

Finally, thousands of sarcoma advocates who participated in the Sarcoma Alliance and SFA (and others) education endeavors. We know an empowered community is key in efforts to bring change to the sarcoma landscape.  Education not only aids patients and caregivers in advocating for their own care, but also helps to build a group of advocates who can work on behalf of others to raise awareness and influence research and drug development activities.

All facets of the sarcoma community have come together in different ways to support sarcoma patients. In 2021, SFA will invest more in continuing to strengthen the advocate community. To build this educated and empowered community, SFA will expand our programming and resources. Education on topics in sarcoma will  be offered through live webinars and recorded video sessions with sarcoma experts, and through short resource videos on topics of importance. We will also ask the community to come together to support and collaborate on policy issues that impact them. We plan to implement a Patient Advisory Council to provide feedback and assist with our research priorities and work more closely with the research community to further leverage collaborations and advance promising research.

We understand and appreciate the power of patients and SFA is ready to take a lead role in harnessing this power to better the lives of sarcoma patients.