Archive for the ‘sarcoma’ Category
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 »
Inspired by the ALS ice bucket challenge, SFA friend and supporter Donnie Sills came up with a fun idea to bring more awareness and funding to sarcoma and childhood cancers. Donnie, who lost his wife last year to rhabdomyosarcoma, is a tireless advocate for sarcoma patients and their families. He knows first-hand how little funding goes towards sarcoma and childhood cancer research and he wants to do something about it. You can learn more about Donnie’s Pie Challenge here. Take his Pie Challenge and encourage others to do the same. Check out some of the people who have taken Donnie up on his challenge…. 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 »
On the last day of February each year, the rare disease community unites to celebrate Rare Disease Day. In honor of this day, the community joins forces over the course of the last week of February to draw attention to the special needs of those who are dealing with rare diseases like sarcoma. While we work tirelessly every day to raise awareness, we see Rare Disease Day, and the days that lead up to it, as a wonderful opportunity to further educate the public, legislators, and government regulators about the challenges faced by those with sarcoma. As part of the… 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 »
By guest blogger, Jamie Schou In January 2012, after experiencing some soreness in my ribs, I went to my chiropractor for an adjustment. He was working on my back when he noticed a large mass. After an unsuccessful surgery at a local hospital – the surgeon thought the mass was a Lipoma – and lots of searching, in March of 2012 we found an orthopedic surgeon who determined the mass was a Synovial Sarcoma. I went down the usual path – chemo, radiation and surgery. The sugery was a 16 hour ordeal. The tumor was deep in my muscle,… Read More »
Guest blogger Judith Hannan 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 a blog series. ————– It’s September, time… 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 »
As we quickly approach the end of 2012, we at the Sarcoma Foundation of America (SFA) would like to take a moment to reflect on some of the major accomplishments achieved over the past year. These successes are possible because of you! Because of the wonderful contributions made by SFA supporters like you, we are able to move more rapidly toward our shared goal – eradicating sarcoma. Earlier this week, Mark Thornton, President of the SFA Board of Directors, sent a letter to SFA members and donors thanking them for the role that they played in the successes that the… Read More »
We know that we’ve been writing a lot about Rita Saverino Romeo’s appearance on “NY Med.” But having sarcoma on a national stage like this was simply unprecedented. Just think – millions of people watched her story. Millions of people have now heard of sarcoma, many of them likely for the first time. Based on the reactions that we’ve seen on Facebook, Twitter, and the “NY Med” website, people were genuinely touched and amazed by her story. The fact is, Rita’s story is one of many. But she was given an opportunity that most will never have – the opportunity… Read More »