Posts Tagged ‘sarcoma awareness’

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 »

Brendan’s Story

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 »

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 »

Patient & Caregiver Engagement Opportunity: Synovial Sarcoma

The Sarcoma Foundation of America (SFA) partners with sarcoma researchers and industry to collaborate on ways to find more and better therapies for sarcoma patients. SFA does this to ensure that the voices of patients, survivors, caregivers, and sarcoma advocates are represented in research and therapy development. We believe that incorporating perspectives of patients and caregivers positively impacts and improves the overall drug development process. SFA is currently working with a pharmaceutical company on a project in synovial sarcoma. In order to fully understand the patient journey, and to increase understanding and develop treatments and resources for people living with…  Read More »

Sarcoma Awareness Month is Over, but the Work Does Not End

By Brandi Felser, Executive Director This July, we joined together as a community for Sarcoma Awareness Month to honor patients and survivors, remember the loved ones we have lost, and raise awareness about sarcoma. We wore yellow, engaged in educational activities, and shared stories about patient journeys and our loved ones. Thousands of members of the sarcoma community joined SFA for our National Virtual Race to Cure Sarcoma to help raise much needed funds for sarcoma research, and 14 million people were reached through the PSAs that were run in cities across the country. The combined efforts of the sarcoma…  Read More »

SFA Celebrates 20 Years of Sarcoma Research and Advocacy

The Sarcoma Foundation of America Celebrates 20 Years of Sarcoma Research and Advocacy As the Sarcoma Foundation of America (SFA) celebrates our 20 year anniversary, we reflect not only on what we have accomplished, but also on what we envision for the future. Twenty years ago, SFA was founded to fill an unmet need – to fund and advocate for more sarcoma research and to encourage the development of new and better therapies for sarcoma patients. Looking back at these past 20 years, we see the impact of our work. Sarcoma is no longer being left behind, we have harnessed…  Read More »

Join Us for Our 20th Anniversary Celebration

Join the Sarcoma Foundation of America on August 10 for our 20th Anniversary!    Your support has made our work possible, so we want you to be a part of celebrating 20 years of funding vital sarcoma research, spreading awareness, and educating sarcoma patients and others. We invite you to join us virtually on August 10, 2020, to look back on all of the wonderful achievements of the Sarcoma Foundation of America and help us look ahead to an even bigger impact in the future.   Follow our Facebook event page on August 10 to be a part of this special virtual…  Read More »

Sarcoma Awareness Month

By Brandi Felser, Executive Director Each year, over 16,000 children, women and men are diagnosed with sarcoma and 7,000 lose their lives. Although sarcoma is considered a “rare” cancer, it is not rare to the approximately 50,000 people who are living with the disease. It is not rare to the mothers and fathers, families and friends, who have lost loved ones. Their experiences are, unfortunately, not rare. Certainly, the adjective rare sets sarcoma apart. It means that fewer people are diagnosed with the disease. But the rare designation has more implications. It means that treatment options and research funding has…  Read More »

Sarcoma Awareness Month Social Media Toolkit

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 »

We Need You for the National Race to Cure Sarcoma Virtual Event

    In celebration of Sarcoma Awareness Month, the Sarcoma Foundation of America invites you to join us for the National Race to Cure Sarcoma Virtual event on July 25, 2020. July is an important month for the sarcoma community because it is a time dedicated to those who have been touched by sarcoma. Although we are miles apart, we are connected through our common goal to find a cure for this disease. Join us as we virtually gather together to raise much needed awareness and research dollars in support of sarcoma patients and survivors and ultimately an end to…  Read More »

COVID-19, Collaboration and Sarcoma

By Brandi Felser, Executive Director COVID-19, Collaboration & Sarcoma Treating cancer like a pandemic: Collaboration is necessary to cure sarcoma COVID-19 has hit us like a wrecking ball. There is no part of society that has gone untouched. Despite the damage this pandemic has done, there has been some positive. The “system” of science has been upended and the science community has united, focused on one goal. All of our resources are being pooled to fight this virus. Data and information are being shared in new ways, shared faster and are freely available. #MedTwitter and other science threads offer information…  Read More »

Race to Cure Sarcoma Needs You Now More Than Ever

  The Race to Cure Sarcoma needs you now more than ever!   The current COVID-19 situation has caused events all over the country to be rescheduled or canceled. At the Sarcoma Foundation of America (SFA), the safety of sarcoma patients and RTCS participants are our top priority.   SFA is closely following federal government and individual state reopening plans and SFA is taking these plans into consideration as we make decisions to reschedule events or change to virtual events.   We know we must continue our goal of supporting research that leads to life saving treatments for sarcoma patients…  Read More »

Twenty Years of the SFA

By Brandi Felser, Executive Director Twenty years later, SFA continues to be a voice and leader for the sarcoma community. Twenty years ago, before SFA, not much attention was paid to sarcoma. There were few treatment options, and no organization or institution focused on developing new therapies or expediting new treatments for patients. Sarcoma was a forgotten cancer. Fast forward 20 years. Sarcoma awareness has substantially increased, more, though not nearly enough, therapies are available, and innovative and novel agents such as immune-oncology are beginning to be applied to sarcoma. And SFA has shown that we have the ability to…  Read More »

What is Sarcoma?

Sarcoma is a rare type of cancer and typically produces malignant tumors derived from the connective tissue.  There are more than 70 sarcoma types and subtypes. Soft Tissue Sarcoma Soft tissue sarcoma broadly defines cancers that develop in the body’s soft tissues (i.e. muscles, tendons, fat, lymph vessels, blood vessels, and nerves). While these cancers are most commonly found in the head, neck, arms, legs, chest, and abdomen, they can develop anywhere in the body. There are various different types of soft tissue sarcoma, and depending on the type of soft tissue the cancer started in, the cells will look…  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 »

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 »

Epithelioid Sarcoma Infographic

For Sarcoma Awareness Month, Epizyme has developed an infographic to spread awareness for epithelioid sarcoma. Click here to download the infographic in its entirety.               

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 Artwork Contest Winners

The results of our 2017 Children’s Sarcoma Artwork Contest are in and it’s a tie! Congratulations to both Alli and Ellie, 11-year-old twins. They created their pieces in memory of their beloved brother, Brice. Brice passed away from Epithelioid Sarcoma. Alli’s artwork will be featured on the SFA’s 2017 holiday card. Ellie’s work will be used for new SFA note cards. Both Alli and Ellie’s artwork is now featured in our SFA shop!  Visit http://www.cafepress.com/curesarcoma and click on the “Children’s Artwork” tab to see the newest merchandise with Alli and Ellie’s designs. Thank you again to everyone who submitted their art. All…  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 »

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 »

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 »

A Letter to Vice President Biden

Today’s post comes to us from Brendan Locke.  Brendan’s wife Melissa was diagnosed with sarcoma in January 2016.  Since that time, her disease has been at the forefront of their lives. As you might imagine, Brendan has made it his mission to see that she receives the best treatment possible.  He has also made advocacy and sarcoma awareness a significant priority, working not only to improve things for Melissa, but also to serve as a voice for the greater good.  Brendan recently wrote to Vice President Joe Biden, the force behind the Cancer Moonshot initiative, to share Melissa’s story and bring attention to the needs…  Read More »