Posts Tagged ‘sarcoma cancer’

2020: What A Year!

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 »

Patient & Caregiver Engagement Opportunity: Synovial Sarcoma

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 »

Sarcoma Awareness Month is Over, but the Work Does Not End

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 »

SFA Celebrates 20 Years of Sarcoma Research and Advocacy

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 Us for Our 20th Anniversary Celebration

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

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 »

Sarcoma Awareness Month

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

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 »

Research Review: Promising Research Advancements in Sarcoma

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 »

We Need You for the National Race to Cure Sarcoma Virtual Event

    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 »

Sarcoma Foundation of America Announces 2020 Research Grant Awards

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 »

Sarcoma and Coronavirus: What Now?

Now that many states and localities are starting to lift shelter-in-place restrictions and move into phases of reopening, what do sarcoma patients need to know? As a follow-up to our April session, the Sarcoma Foundation of America is reuniting the panel of sarcoma experts to share their thoughts on how COVID-19 may continue to impact care and what sarcoma patients need to know as we begin the phases of reopening. Our multidisciplinary panel will answer your questions and address concerns on issues of care, the impact on research and clinical trials, and next steps as we move forward.     Saturday,…  Read More »

COVID-19, Collaboration and Sarcoma

By Brandi Felser, Executive Director COVID-19, Collaboration & Sarcoma Treating cancer like a pandemic: Collaboration is necessary to cure sarcoma COVID-19 has hit us like a wrecking ball. There is no part of society that has gone untouched. Despite the damage this pandemic has done, there has been some positive. The “system” of science has been upended and the science community has united, focused on one goal. All of our resources are being pooled to fight this virus. Data and information are being shared in new ways, shared faster and are freely available. #MedTwitter and other science threads offer information…  Read More »

Race to Cure Sarcoma Needs You Now More Than Ever

  The Race to Cure Sarcoma needs you now more than ever!   The current COVID-19 situation has caused events all over the country to be rescheduled or canceled. At the Sarcoma Foundation of America (SFA), the safety of sarcoma patients and RTCS participants are our top priority.   SFA is closely following federal government and individual state reopening plans and SFA is taking these plans into consideration as we make decisions to reschedule events or change to virtual events.   We know we must continue our goal of supporting research that leads to life saving treatments for sarcoma patients…  Read More »

Help Cure Sarcoma on #GivingTuesdayNow

The heart of the Sarcoma Foundation of America is research and donors like you have made SFA the leading research and sarcoma patient advocacy organization in the country. Join SFA for the GivingTuesdayNow Global Campaign Around the end of November each year, people all over the world come together and donate for GivingTuesday.  We are always awestruck by the sense of community created when millions of people collectively support charitable organizations on a single day. GivingTuesdayNow is a new global effort being held on May 5 to promote charitable organizations and their need for support during these uncertain times. SFA is…  Read More »

Advocate Profile: Brittany Symonds

  “I refuse to let cancer win. Cancer will not determine how I live.” -Brittany Symonds   A sarcoma diagnosis can have a life changing impact on the lives of those in our communities, but one of our advocates and Race to Cure Sarcoma Tampa participants is showing us that we do not have to let this diagnosis take away from us what we love in life.    Brittany Symonds was diagnosed in summer of 2015 with leiomyosarcoma in her leg after she was injured when playing softball. This led to more than 11 surgeries, radiation, multiple scans, and having to face the…  Read More »

SFA Joins Other Cancer Organizations on Pandemic Response Letters

The Sarcoma Foundation of America joined more than 50 other cancer organizations on letters to Congress and Department of Health and Human Services Secretary Alex Azar calling on legislators and the Administration to  ensure that cancer patients have access to health coverage and treatment during the COVID-19 pandemic.  The letters address pressing needs including oral chemotherapy parity, access to 90-day supplies of medications, and reliable access to telehealth services.   Letter to Congress Letter of Health and Human Services Secretary Alex Azar    

Sarcoma & Coronavirus: Your Questions Answered

  In response to the COVID-19 outbreak, the Sarcoma Foundation of America (SFA) held a live, online session with a panel of sarcoma experts to discuss the impact the coronavirus pandemic is having on sarcoma patients and survivors.  Panelists Brian Van Tine, MD, PhD, Washington University in St. Louis, Kurt Weiss, MD, University of Pittsburgh School of Medicine, and Breelyn Wilky, MD, University of Colorado Cancer Center, answered questions submitted by the sarcoma community.  The panelists shared input on issues related to how on patients can communicate with their physicians on the risks and benefits of current care and treatment…  Read More »

Message to the Sarcoma Community

Like most of you, the Sarcoma Foundation of America (SFA) has been closely following news regarding the novel coronavirus, COVID-19.  While many questions remain regarding the impact that it will have in the United States, SFA is following recommended protocol to help stop the spread by closing our office and teleworking. SFA will continue our efforts to advocate for sarcoma patients and their families and is still available to serve as a resource to the sarcoma community.  You can reach the SFA by phone at 301-253-8687 or by email at [email protected] We are evaluating upcoming events and will be announcing…  Read More »

Twenty Years of the SFA

By Brandi Felser, Executive Director Twenty years later, SFA continues to be a voice and leader for the sarcoma community. Twenty years ago, before SFA, not much attention was paid to sarcoma. There were few treatment options, and no organization or institution focused on developing new therapies or expediting new treatments for patients. Sarcoma was a forgotten cancer. Fast forward 20 years. Sarcoma awareness has substantially increased, more, though not nearly enough, therapies are available, and innovative and novel agents such as immune-oncology are beginning to be applied to sarcoma. And SFA has shown that we have the ability to…  Read More »

The Power of the Sarcoma Community

By Brandi Felser, Executive Director In my very first days on the job as the new Executive Director of the Sarcoma Foundation of America, I had the opportunity to experience first-hand the power of the sarcoma community. For the first time ever, the US Food and Drug Administration (FDA) was reviewing for approval a proposed drug for the treatment of epithelioid sarcoma, a particularly rare and aggressive subtype of sarcoma. Epithelioid sarcoma has few effective treatment options and patients are often left with little or no hope for long-term survival. As a part of the approval process, the benefits of…  Read More »

Sarcoma Foundation of America Announces Brandi Felser as Executive Director

DAMASCUS, Md. – February 3, 2020 – The Sarcoma Foundation of America (SFA), an organization dedicated to increased research, awareness and advocacy for sarcoma, announces Brandi Felser as its new Executive Director.   Felser joins the SFA with more than 20 years of experience in non-profit development and management.  Felser, most recently Chief Operating Officer – Chief of Staff of the National Breast Cancer Coalition, also brings to the SFA a strong background in cancer research advocacy, making her well positioned to lead the organization’s mission to advocate for sarcoma patients by funding research and increasing awareness about this rare…  Read More »

Support Innovative Sarcoma Research

Thanks to you, the Sarcoma Foundation of America has made significant investments in innovative research for new sarcoma therapies, advancing us toward a cure in our time. In 2019, SFA awarded close to $2 million in research funding, making us the leading supporter of sarcoma research in our community. Our research investments have been a catalyst to significant progress. But we know there is still much left to do.  Your year-end gift will help us continue to be the leading voice for patients, survivors, and caregivers, bring more awareness to sarcoma, and make important investments in innovative research.   Donate now and continue…  Read More »

SFA Partners with the My Pediatric and Adult Rare Tumor (MyPART) Network

The Sarcoma Foundation of America (SFA) is proud to have partnered with the My Pediatric and Adult Rare Tumor (MyPART) Network, a project coordinated through the National Cancer Institute’s (NCI) Center for Cancer Research (CCR).  The MyPART Network is a group of patients, family members, researchers, advocates, and healthcare providers who are working together to find treatments for childhood, teen, and young adult rare solid tumors. MyPART believes that working together will help accelerate the discovery of treatments for rare cancer.   The MyPART Networkwas established to bring together patients, their family members, healthcare providers, patient advocates, and researchers to…  Read More »

SFA Now Accepting Applications for 2020 Research Grants

  For complete instructions and guidelines, please review the 2020 Funding Opportunity Announcement PDF.  Information can also be found in the Grants FAQ. Interested parties may begin submitting grant applications on Tuesday, October 1, 2019.  Grants will be reviewed by the SFA Medical Advisory Board immediately following the application deadline of 5:00 pm EST on January 31, 2020.  Researchers must submit proposals electronically at proposalCENTRAL.  First-time users will be required to register and complete a professional profile in order to apply for an SFA research grant.  The SFA does not accept applications via e-mail.