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Archive for the ‘sarcoma’ Category

A Powerful Sarcoma Community

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 »

Donnie Sills’ Pie Challenge for Sarcoma and Childhood Cancers

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 »

Faces of Childhood Cancer Project

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 »

Make Your Voice Heard – Rare Disease Day

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 »

Mike Judge vs. Ewing’s Sarcoma

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 »

Life — The Adventure

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 »

Earning our Gold Ribbons

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 »

Beating Sarcoma to the Finish Line

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 »

An Open Letter to Miles 2 Give

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 »

Chronicling a Child’s Illness and Finding Transformation

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 »