Posts Tagged ‘Sarcoma 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 »
It has been over 2,000 days since a doctor told my wife Melissa she had synovial sarcoma. It has been over 1,400 days since her fight ended and my life and our kids’ lives changed in a way I never thought would happen. Melissa inspired me to live life large! To fight like hell for others and most importantly, to make a difference in our lives and to show the boys that we help others- no matter what our struggles are, someone else’s is always greater! Senator Johnson first met Melissa and I on February 28, 2017. He gave us… Read More »
Sarcoma Awareness Month Social Media Toolkit During July, the sarcoma community unites together for Sarcoma Awareness Month to bring more attention to the needs of sarcoma patients, survivors, and their families. Though the Sarcoma Foundation of America (SFA) works tirelessly every day to raise awareness, during Sarcoma Awareness Month we aim to further highlight the need for more sarcoma research and better sarcoma therapies. Please join us in our efforts to raise more awareness! One way to raise sarcoma awareness is by spreading the word through social media. Social media can be a powerful tool to share your story and… Read More »
“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 »
The Sarcoma Foundation of America joined more than 50 other cancer organizations on letters to Congress and Department of Health and Human Services Secretary Alex Azar calling on legislators and the Administration to ensure that cancer patients have access to health coverage and treatment during the COVID-19 pandemic. The letters address pressing needs including oral chemotherapy parity, access to 90-day supplies of medications, and reliable access to telehealth services. Letter to Congress Letter of Health and Human Services Secretary Alex Azar
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 »
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 »
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 »
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 »
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 »
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 »
Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America. Over the past few weeks we’ve seen the Food and Drug Administration (FDA) make decisions regarding some investigational therapies for sarcoma. In that time, one investigational new drug received priority review status, which cuts the drug review period from 10 months to six months. Another was given fast track designation. This designation is also intended to expedited the review process for “serious conditions with unmet medical need.” Certainly sarcoma falls into that category. The Sarcoma Foundation of America (SFA) has long been… Read More »
Today’s post was written by Bert E. Thomas IV, PhD, CEO of the Sarcoma Foundation of America. Like most in the sarcoma advocacy community, you are probably very well acquainted with July as Sarcoma Awareness Month. You’ve no doubt heard of September being known as Childhood Cancer Awareness Month. Hopefully you’ve also become familiar with the last day in February being set aside for Rare Disease Day. As you know, each of these campaigns gives us special opportunities to bring awareness to the needs of sarcoma patients, caregivers, and survivors. SFA supporters like you always step up and help us… Read More »
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 »