Posts Tagged ‘Advocacy’
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 »
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 »
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 »
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 »
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 »
Dear Sarcoma Foundation of America Supporter, As the calendar takes us into the holiday season, we take the time to reflect on the year that has passed. In the sarcoma community, 2016 has been a year of hope and progress. Two new sarcoma drugs have been approved, one drug for Leiomyosarcoma and Liposarcoma patients and another approved broadly for Soft Tissue Sarcoma patients. These new therapeutic options give us continued hope for better patient outcomes and represent the progress that sarcoma researchers have made over the last decade. The type of hope and progress that the sarcoma community experienced in… Read More »
The White House today released a fact sheet outlining the focus of the newly formed Cancer Moonshot Task Force. Highlights of the new initiative include support for funding increases for cancer-related activities at the National Institutes of Health and the Food and Drug Administration, as well as a focus on activities such as pursuing genomic analysis of tumors and efforts to discover immunotherapies and combination therapies. Please make your voice heard during this process. Share your story and how you have been impacted by sarcoma with the Vice President and the Cancer Moonshot Task Force. THE WHITE HOUSE… Read More »
Alliance for Childhood Cancer Faces of Childhood Cancer Project The Alliance for Childhood Cancer, of which the Sarcoma Foundation of America is a member, is hosting the 2014 Childhood Cancer Action Days in June. The Action Days include issues and advocacy training, and pre-arranged Capitol Hill visits with Congressional Representatives and their staff. The goal is to provide the childhood cancer community – parents, children, healthcare professionals and others – with the opportunity to visit their Representatives on Capitol Hill and advocate for the important childhood cancer issues currently before Congress. There is still time to register. Please visit the… Read More »
Even though Sarcoma Awareness Month will soon be coming to a close, there is still time to take action and help raise the profile of this rare cancer. Our colleagues at the Sarcoma Alliance have undertaken an effort to have the United States House of Representatives officially recognize July as Sarcoma Awareness Month. Thanks to their hard work, Rep. Kathy Castor (D-FL) in June introduced H. Res. 722, a resolution expressing support for designation of July as National Sarcoma Awareness Month. Since its introduction, H.Res. 722 has gained two additional co-sponsors. With the month of July quickly winding down, now… Read More »