SFA News
Live virtual session discussing genomic testing in sarcoma treatment. Areas to be discussed include a background on genomic testing, current state of genomic testing for accurate diagnosis and identifying treatment options, and a discussion of if, and how, genomic testing may help with treatment in the future. If you missed the live session, you can watch the recording here.
SFA and sarcoma awareness were recognized during the December 5 National Football League My Cause My Cleats campaign. Through this campaign, players have the opportunity to pick a cause that is important to them and represent their chosen organization on custom designed cleats. SFA thanks John Franklin-Myers, New York Jets, Tim Patrick, Denver Broncos, and Trent Williams, San Francisco 49ers for using their platform and their personal sarcoma connection to shine a light on the sarcoma community.
The next round of grant funding is opening November 1. SFA is the largest private funder of research in the sarcoma community and these grants are important to advancing new therapies for sarcoma patients. Thank you to everyone who has donated to this grant program or participated in our Race to Cure Sarcoma events. It is because of you that we are able to support sarcoma research and patients. Learn More Now
— Williams to receive organization’s Courage Award at virtual ceremony September 28 — WASHINGTON, D.C.; SEPTEMBER 27, 2021 — The Sarcoma Foundation of America announced today that San Francisco 49ers offensive tackle Trent Williams will receive the organization’s 2021 Courage Award as well as serve as a Sarcoma Foundation Ambassador. In this role, the organization looks forward to Trent discussing his own experience with sarcoma — including surgery to remove the tumor from the soft tissues near his brain — as well as his recovery and return to NFL football. “Sarcoma is the rarest and most underfunded… Read More »
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
The Sarcoma Foundation of America (SFA) partners with sarcoma researchers and industry to collaborate on ways to find more and better therapies for sarcoma patients. SFA does this to ensure that the voices of patients, survivors, caregivers, and sarcoma advocates are represented in research and therapy development. We believe that incorporating perspectives of patients and caregivers positively impacts and improves the overall drug development process. SFA is currently working with a pharmaceutical company on a project in synovial sarcoma. In order to fully understand the patient journey, and to increase understanding and develop treatments and resources for people living with… Read More »
By Brandi Felser, Executive Director This July, we joined together as a community for Sarcoma Awareness Month to honor patients and survivors, remember the loved ones we have lost, and raise awareness about sarcoma. We wore yellow, engaged in educational activities, and shared stories about patient journeys and our loved ones. Thousands of members of the sarcoma community joined SFA for our National Virtual Race to Cure Sarcoma to help raise much needed funds for sarcoma research, and 14 million people were reached through the PSAs that were run in cities across the country. The combined efforts of the sarcoma… Read More »
The Sarcoma Foundation of America Celebrates 20 Years of Sarcoma Research and Advocacy As the Sarcoma Foundation of America (SFA) celebrates our 20 year anniversary, we reflect not only on what we have accomplished, but also on what we envision for the future. Twenty years ago, SFA was founded to fill an unmet need – to fund and advocate for more sarcoma research and to encourage the development of new and better therapies for sarcoma patients. Looking back at these past 20 years, we see the impact of our work. Sarcoma is no longer being left behind, we have harnessed… Read More »
Join the Sarcoma Foundation of America on August 10 for our 20th Anniversary! Your support has made our work possible, so we want you to be a part of celebrating 20 years of funding vital sarcoma research, spreading awareness, and educating sarcoma patients and others. We invite you to join us virtually on August 10, 2020, to look back on all of the wonderful achievements of the Sarcoma Foundation of America and help us look ahead to an even bigger impact in the future. Follow our Facebook event page on August 10 to be a part of this special virtual… Read More »
Sarcoma Foundation of America Oral Therapy Preferences Survey Results In late June, the Sarcoma Foundation of America (SFA) launched a sarcoma advocate survey to collect patient, survivor, and caregiver opinions on oral therapy usage preferences. The survey was shared through SFA’s social media platforms, the SFA website, the SFA newsletter, and through a widely-distributed email. More than 150 respondents took part in the survey. Half of respondents identified themselves to be sarcoma survivors or patients in current treatment. Patients in treatment and sarcoma survivors were asked to provide their subtype. More than 20 subtypes were represented in the answers, with… Read More »
By Brandi Felser, Executive Director Each year, over 16,000 children, women and men are diagnosed with sarcoma and 7,000 lose their lives. Although sarcoma is considered a “rare” cancer, it is not rare to the approximately 50,000 people who are living with the disease. It is not rare to the mothers and fathers, families and friends, who have lost loved ones. Their experiences are, unfortunately, not rare. Certainly, the adjective rare sets sarcoma apart. It means that fewer people are diagnosed with the disease. But the rare designation has more implications. It means that treatment options and research funding has… Read More »
Sarcoma Awareness Month Social Media Toolkit During July, the sarcoma community unites together for Sarcoma Awareness Month to bring more attention to the needs of sarcoma patients, survivors, and their families. Though the Sarcoma Foundation of America (SFA) works tirelessly every day to raise awareness, during Sarcoma Awareness Month we aim to further highlight the need for more sarcoma research and better sarcoma therapies. Please join us in our efforts to raise more awareness! One way to raise sarcoma awareness is by spreading the word through social media. Social media can be a powerful tool to share your story and… Read More »
Join us for the next session in the Sarcoma Foundation of America’s Live Expert Chat series during Sarcoma Awareness Month. On Saturday, July 18, 2020, SFA will host a panel of sarcoma experts who will discuss the latest insights on advancements in sarcoma research. Drs. Sujana Movva, Katherine Thornton, and Jonathan Trent will share their thoughts and analysis of sarcoma research efforts that were presented during the American Society for Clinical Oncology’s (ASCO) Annual Meeting in May. Webinar participants will have the opportunity to submit questions to the panel during the session. Saturday, July 18, 2020 12:00 pm EDT… Read More »
In celebration of Sarcoma Awareness Month, the Sarcoma Foundation of America invites you to join us for the National Race to Cure Sarcoma Virtual event on July 25, 2020. July is an important month for the sarcoma community because it is a time dedicated to those who have been touched by sarcoma. Although we are miles apart, we are connected through our common goal to find a cure for this disease. Join us as we virtually gather together to raise much needed awareness and research dollars in support of sarcoma patients and survivors and ultimately an end to… Read More »
DAMASCUS, Md. – May 28, 2020 – The Sarcoma Foundation of America (SFA), an organization dedicated to increasing research and awareness for sarcoma, today announced that it has awarded three-quarters of a million dollars in research funds to deserving scientists as part of its 2020 SFA Research Grant program. Fifteen research grants, each worth $50,000, have been awarded to researchers who have made it their mission to study sarcoma, a cancer that arises in the body’s soft tissue and bone. All proposals are peer reviewed by members of the SFA Medical Advisory Board who award the grants to the best,… Read More »