Posts Tagged ‘sarcoma awareness month’
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 »
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 »
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 »
Sarcoma Foundation of America Oral Therapy Preferences Survey Results In late June, the Sarcoma Foundation of America (SFA) launched a sarcoma advocate survey to collect patient, survivor, and caregiver opinions on oral therapy usage preferences. The survey was shared through SFA’s social media platforms, the SFA website, the SFA newsletter, and through a widely-distributed email. More than 150 respondents took part in the survey. Half of respondents identified themselves to be sarcoma survivors or patients in current treatment. Patients in treatment and sarcoma survivors were asked to provide their subtype. More than 20 subtypes were represented in the answers, with… Read More »
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 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 »
For Sarcoma Awareness Month, Epizyme has developed an infographic to spread awareness for epithelioid sarcoma. Click here to download the infographic in its entirety.
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 »