Posts Tagged ‘cure sarcoma’

Virtual Advocacy Day

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 »

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 »

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 »

Volunteer Profile: Thomas Rank

By Thomas Rank, Guest Contributor Why do I ride? On a warm day in the summer of 2015, I arrived at my first cross country practice. The team always met at the local park shelter before practice where the summer breeze would often compliment the harmonious symphony of chatter and laughter between teammates. Suddenly, the talking would cease and our coach, who in his own right is a great man and leader, would begin his speech about the daily agenda. While listening, I couldn’t help but notice Ben Harmon have a smile across his face. He raised his hand and…  Read More »

Find Support and Share Experiences Through Sarcoma Connect

  The Sarcoma Foundation of America is excited to announce that we have partnered with Inspire to bring a new online support community to sarcoma patients, survivors, and caregivers.  Sarcoma Connect provides a secure space where those impacted by sarcoma can anonymously chat, share experiences, ask questions, and receive support from those who understand what they are going through.  We invite you to join the discussion and connect with others at inspire.com/groups/sarcomaconnect/.   

Teens Coordinate Concert Series to Raise Money for Sarcoma Research and Awareness

By Elizabeth Brown, Guest Contributor   My name is Elizabeth Brown and I am 14 years old. I have a twin brother named Matthew. Our good friend and classmate was recently diagnosed with rhabdomyosarcoma, and we wanted to show our support by doing something that would benefit him and all people fighting sarcoma. We knew that we could make a difference through our talents of music. I play classical guitar, violin, and sing, and Matthew plays piano and organ. Together, we organized the St. Mark Young Artists Concert series to benefit the Sarcoma Foundation of America. We performed a variety…  Read More »

The Race to Cure Sarcoma is Bigger & Better in 2018

Excitement for the 2018 Race to Cure Sarcoma™ season is building as we head into what will no doubt be our biggest and best year yet!  The Race to Cure Sarcoma™ remains the premier run/walk series in the United States focused on raising awareness and research funds for sarcoma.    Organized by the Sarcoma Foundation of America (SFA), the Race to Cure Sarcoma™ is made up of family-friendly 5K run/walks held in cities across the nation. Last year, nearly 3,500 people participated in the Race to Cure Sarcoma™.    What makes the 2018 Race to Cure Sarcoma™ so exciting?    …  Read More »

2017 Year in Review

We are nearing the end of the first month of 2018 and the sarcoma Foundation of America (SFA) is grateful for everything that you’ve done in 2017. Your work makes a difference in the lives of sarcoma patients and their families While we can’t wait to see what the rest of 2018 will bring, we first want to take a moment to look back on the previous year. Thanks to your support and generosity, the Sarcoma Foundation of America had an exceptional 2017!  In 2017, your gifts: Funded more than three quarters of a million dollars in sarcoma research.  …  Read More »

The Healing Power of Comedy

 Today’s post was written by Sara Jade Alan, a sarcoma survivor and author.   In 2005, I was in my twenties and living and performing comedy in New York City. I had just completed an eight-month yoga-teacher training program when I discovered a lump on my outer left thigh. I thought it would be nothing, but I went to see an orthopedic doctor about it to make sure. He coolly told me: tumor. I remember walking out of his office onto the blustery NYC street, the giant X-ray envelope whipping around in my hands like a sail—as if to warn, the…  Read More »

Meet the Researcher – Andrew Koff, PhD

Andrew Koff, PhD, Member and Professor, Sloan Kettering Institute, Memorial Sloan Kettering Cancer Center   2014 Heidi Connery Memorial Research Grant: “Proteomic and genomic approaches to understanding intrinsic and acquired resistance to CDK4 inhibition therapy in well differentiated/dedifferentiated liposarcoma”   PLEASE DESCRIBE THE FOCUS OF THE RESEARCH PERFORMED IN YOUR LAB. The laboratory of cell cycle regulation at Memorial Sloan Kettering Cancer Center is interested in identifying the genes and proteins that regulate the transition of cells from quiescence, a reversible type of proliferative exit, to senescence, a more stable irreversible type of proliferative exit.  Proliferation associated with a deregulated cell cycle…  Read More »

Sarcoma Foundation of Announces 2017 Research Grants

  DAMASCUS, Md. – May 24, 2017 – The Sarcoma Foundation of America (SFA), an organization dedicated to increased awareness and research for sarcoma, today announced that it has awarded $500,000 in research funds to deserving scientists at institutions across the United States as part of its 2017 SFA Research Grant program. Ten research grants, each worth $50,000, have been awarded to researchers who have made it their mission to study sarcoma, a rare 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…  Read More »

It’s Been a Privilege

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America. This is my last week at the Sarcoma Foundation of America (SFA). Over the last three years it has been my privilege to serve the sarcoma patient community through my role at the SFA. I have meet so many amazing patients, caregivers, doctors and researchers in that time. I have been moved by the challenges that each face, the perseverance that they demonstrate in their individual and collective efforts to achieve better patient outcomes, and the hope and optimism that the sarcoma community…  Read More »

Racing Toward a Cure for Sarcoma

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America.   In the three years that I have been with the Sarcoma Foundation of America, I have had the privilege of serving the sarcoma community. An important part of my job as CEO is to meet patients, caregivers and loved ones, learn about their patient journeys, and try to understand the challenges that each and every sarcoma patient deals with on their path to becoming a sarcoma survivor. I have also worked closely with sarcoma doctors and researchers, learning about their efforts to…  Read More »

Sarcoma Foundation of America to Honor Lilly Oncology for Advancements in the Treatment of Soft Tissue Sarcoma

– Vision of Hope Award to be presented at the SFA’s 15th Annual Fundraising Gala –   DAMASCUS, Md. – April 10, 2017– The Sarcoma Foundation of America (SFA), an organization dedicated to increased research funding and advocacy for sarcoma, is pleased to announce that Lilly Oncology is the 2017 recipient of the Vision of Hope Award.  Lilly Oncology will be honored at the SFA’s 15th Annual New York fundraising gala, “A Celebration of Life.”  The event will take place on April 20, 2017, at Guastavino’s, 409 E 59th Street, New York, NY. The Vision of Hope Award is presented…  Read More »

Rare Disease Day 2017

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America.   Two years ago, I wrote a blog post in honor of Rare Disease Day.  Entitled, “Shedding Light on the Forgotten Cancer,” it was a piece meant to raise awareness for a little known disease on a day designed to bring attention to a community of patients that are so often overlooked. It seems appropriate to share that post again as we are near Rare Disease Day 2017. On the last day of February, the rare disease community will collectively join voices and…  Read More »

A Window of Hope

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America.   There was a long period of time where there seemed to be little to no progress in finding ways to battle the forgotten cancer known as sarcoma. This period of time lasted for decades, though it probably felt more like centuries to the patients and families that were desperately looking for treatment options that never seemed to come. And while sarcoma still takes too many of our loved ones from us, progress in our fight against this terrible disease is finally being…  Read More »

SFA Launches Public Service Announcement Campaign

The Sarcoma Foundation of America recently launched a new Public Service Announcement (PSA) campaign. The campaign, named “Sarcoma is Cancer,” is designed to educate a broader audience about sarcoma, introducing many listeners to this rare cancer for the very first time. These PSAs have already begun airing on radio stations across the United States, with more stations slated to run the ads before the end of the year.   Listen to the PSAs: “Sarcoma is Cancer” 60 Second PSA “Sarcoma is Cancer” 30 Second PSA The PSAs are also available at www.curesarcoma.org/sfa-in-the-news/. You can be a part of the effort to raise…  Read More »

Hope Through Advocacy and Policy

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America. As I write my last blog for the year, I can’t help but to think about the time of year and what it means for everyone. The Holiday Season is a time of hope and renewal, a time to spend with family and friends, and time to celebrate the special moments and accomplishments of the year. It is also a time to embrace the hope and excitement of the new year. With that said, I’d like to share with you the outcomes of…  Read More »

Action Alert: #CancerVoice Action Day on Twitter

The Sarcoma Foundation of America (SFA) is joining with other cancer advocacy organizations through the One Voice Against Cancer (OVAC) alliance for a Twitter action day on Tuesday, December 6. The point of this action day is to urge Members of Congress to include the Cancer Moonshot funding provided from the 21st Century Cures Act in a FY 2017 Continuing Resolution (CR). It is critical that we make every effort to ensure that the funds for the Cancer Moonshot are included in the CR so that the research proposals in the Blue Ribbon Panel report can be funded without further delay. We…  Read More »

A Note of Thanks

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America. In honor of Thanksgiving, I would like to take a moment to share my heartfelt thoughts of gratitude. I know that I speak for all of the staff at the Sarcoma Foundation of America with this list of thanks. Our work to find the cure in our time is inspired by the sarcoma community and is accomplished thanks to the help we receive from those who share the same goal of improving the lives of those touched by sarcoma. Thank you to… The…  Read More »

Filling the Research Gap

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America. At the heart of the Sarcoma Foundation of America’s (SFA) mission is research. The needs of the sarcoma community are many – the need for more awareness, more education, and more resources is unquestionable. And while the SFA places a high priority on those needs, we know that one of the greatest needs of all is for increased research. Nothing will ultimately change for sarcoma patients and their families without increased and sustained research. This means that we advocate for increased federal funds…  Read More »

Medical Innovation Provides Hope to Pediatric Sarcoma Patients

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America. As I write this blog, we find ourselves in the midst of Childhood Cancer Awareness Month, a time to educate the public about the realities of childhood cancer and to draw attention to the need for more pediatric cancer research.  For the Sarcoma Foundation of America, Childhood Cancer Awareness Month is also a time to remind everyone that sarcomas are not just a cancer of adults, but also of children and young adults.  Sarcomas account for 15 – 20% of all childhood cancers, a…  Read More »

Honor the Kids and Teens Fighting Sarcoma Today

September means back to school for many. For us at the Sarcoma Foundation of America (SFA), it also means bringing awareness to the kids and teens fighting Sarcoma. You see, September is Childhood Cancer Awareness Month. Did you know that TWENTY percent of all pediatric cancers are Sarcomas? Children fighting Sarcoma are dealing with terrifying visits to the hospital for surgery, chemotherapy and radiation treatments. Your gifts to the Sarcoma Foundation of America will provide hope to kids like: the toddler diagnosed with rhabdomyosaroma when their milestones should be learning to walk–and run. the school-aged child that has a pain…  Read More »

Hope and Help

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America. Hope and Help is my patient advocacy motto. I believe that one can characterize patient advocacy efforts into two buckets: activities focused on Hope and activities focused on Help.  Hope for finding a cure and Help with the patient journey.  Historically patients had the smallest voice in terms of advocacy, but that is not the case anymore.  The accomplishment of the patient advocacy community in raising the impact and importance of the patient voice is a testament to how a group of people…  Read More »

Denver City Council President Albus Brooks to Serve as Chair for the Inaugural RTCS Denver

— 5K Event to Raise Awareness and Funds for Sarcoma Research — DAMASCUS, Md. – August 19, 2016— Sarcoma survivor and Denver City Council President Albus Brooks will serve as the Chairperson of the inaugural Race to Cure Sarcoma Denver.  The charity 5K run/walk will benefit the Sarcoma Foundation of America (SFA) and the University of Colorado Cancer Center. Brooks was diagnosed in July with Chondrosarcoma, a subtype of sarcoma.  Sarcoma is a rare cancer of bone and soft tissue.  It is rather rare in adults, comprising only 1 percent of all adult cancers, but accounts for 15 percent of…  Read More »