By Brandi Felser, CEO Advocating on behalf of those impacted by sarcoma has been a core principle of the Sarcoma Foundation of America’s mission since the organization was founded in 2001. The SFA continues to be actively engaged in the public policy arena, urging legislators and regulators to place a high priority on rare cancer research, drug development, and access to quality patient care. We are also actively engaged in coalitions like the Alliance for Childhood Cancer, the Cancer Leadership Council, One Voice Against Cancer and many others where we actively engage in advocacy letters to Members, action items and… Read More »
SFA would like to hear from you! What are the greatest needs in the sarcoma community and what should the priorities be for 2021: more education; increased information about clinical trials; greater opportunity to come together for advocacy? Let us know by completing this survey: https://www.surveymonkey.com/r/TRHQPVM
SFA joined a broad spectrum of organizations representing laboratory, translational, and clinical researchers; other health care professionals; patients with cancer; and patient advocates in sending a letter to the Biden administration and other public health officials that highlights the importance of prioritizing patients with active cancer and survivors of cancer when administering COVID-19 vaccines. http://bit.ly/2OEkvVW
SFA is proud to have once again received a 4-star rating on Charity Navigator – its highest score. Their ratings help donors make informed giving decisions and enable well-run charities to demonstrate their commitment to proper stewardship of contributions.
It has been over 2,000 days since a doctor told my wife Melissa she had synovial sarcoma. It has been over 1,400 days since her fight ended and my life and our kids’ lives changed in a way I never thought would happen. Melissa inspired me to live life large! To fight like hell for others and most importantly, to make a difference in our lives and to show the boys that we help others- no matter what our struggles are, someone else’s is always greater! Senator Johnson first met Melissa and I on February 28, 2017. He gave us… Read More »
A sarcoma diagnosis doesn’t only affect the patient, but also close friends and family members. Here are some helpful tips for those caring for sarcoma patients.
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… Read More »
By Brandi Felser, Executive Director 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… Read More »
The FDA recently granted orphan drug status to CPI-613 (devimistat) for the treatment of soft tissue sarcoma. The maker, Rafael Pharmaceuticals, launched a phase 1/2 clinical for patients with relapsed/refractory soft tissue sarcoma. Read more about it here
The Sarcoma Foundation of America (SFA) is pleased to announce a research funding opportunity to provide one-year grants in the amount of $50,000, to support translational science research on the etiology, molecular biology, pathogenesis, diagnosis, and treatment of human sarcomas. Grant awards for the 2021 cycle will be made on June 1, 2021. Click here for details and guidelines