Posts Tagged ‘sfa’
Each year, the last week of February is set aside as a time dedicated to raising awareness for the incredible needs of the rare disease community. Last month, several sarcoma advocates made the journey to Washington, DC, to participate in the activities of Rare Disease Week. Advocates from around the United States came together to participate in several events, including a legislative conference hosted by the Rare Disease Legislative Advocates (RDLA), as well as a day of meetings on Capitol Hill. During this time, advocates shared their stories with legislators and their staff to demonstrate why more needs to be… Read More »
DEC. 22, 2014 – ANN ARBOR, MICH. – Focused on their mission to identify new treatments for sarcoma, an uncommon cancer, SARC has leveraged a generous donation to secure the support of the Sarcoma Foundation of America (SFA) and the What Would Willie Want Foundation (QuadW) in a collaborative effort to support a new multi-institutional clinical trial of an anti-PD1 agent. The company who is providing their drug and support for the study of soft tissue sarcoma agreed to provide their drug to study bone sarcomas if additional funding could be secured. SARC secured generous commitments from the Sarcoma Foundation… Read More »
By guest blogger, Mike Judge On August 29, 2013, I was diagnosed with cancer. Ewing’s sarcoma to be exact. What I thought was just a strained triceps ended up being cancer. I didn’t think that it was even possible to have a primary cancer in an extremity. Sarcoma? I had never heard that word in my life until I walked into the orthopedic surgeon’s office on July 26, 2013. I complained of pain that got worse over my freshman year of college at Penn State and noticed a lump in my triceps muscle towards the end of the year. Was… Read More »
SFA is honored to announce that, Marissa Friedman, a sarcoma survivor, runner, and Sarcoma Foundation of America (SFA) volunteer, kicked off the SFA’s inaugural year participating in the San Francisco Marathon on, June 16, 2013. In May 2012, at 27 years old, Marissa was diagnosed with synovial sarcoma which is found in only 800 people annually. Already a runner, she was registered for the 2012 San Francisco Marathon. Instead of spending the summer training, she was receiving chemotherapy treatment and undergoing surgery to remove the tumor which was wrapped around her femoral artery. Marissa’s strength, determination, and refusal to be… Read More »
By Tony Ferlenda, SFA CEO Tomorrow you will complete your courageous and compelling run across the country. Congratulations! Your journey has been an incredible thing to witness. And you have incredible stories to go along with that journey. Along the way you’ve received an education, you’ve educated others, and you’ve made an impact that you may never completely understand. You’ve said that the highlight has been the people that you’ve met. The patients, survivors, families, doctors, nurses and strangers on the street. That’s when you really feel the impact. You think you know, but you have no idea. I’ve used… Read More »
The SFA is delighted to introduce guest blogger Judith Hannan, who has been a writer for over 25 years. She is the author of Motherhood Exaggerated (CavanKerry Press, 2012), her memoir of discovery and transformation during her daughter’s sarcoma cancer treatment and her transition into survival. Ms. Hannan’s daughter Nadia was presented with the SFA Courage Award at the SFA Annual Gala in 2010. She is a featured speaker, a teacher of writing about personal experience to homeless mothers and at-risk adolescents and we are pleased that she has agreed to share her insights about her journey and beyond through… Read More »
By Cookie Rumely, Guest Blogger The love of my life, Paul Rumely, was diagnosed nine years ago with a soft tissue sarcoma. Sarcoma? We had never even heard of the disease and his was so rare that there were hardly any statistics. Approximately one year later, after having fought an amazingly courageous battle, Paul passed away at age 59 in 2005, with even the most notable doctor imaginable in charge of his case. Since 2005, it has been my great pleasure and honor to be involved with the Sarcoma Foundation of America in his memory. I just couldn’t imagine not… Read More »