Sarcoma Strong is an organization founded by, Matthew R. DiCaprio, MD, a practicing Musculoskeletal Oncologist who wanted to do more for his local sarcoma family. Our goals are simple. We want to be able to support our sarcoma families at every step of their journey with sarcoma. When first diagnosed, offering them guidance and sources for information to help them with critical decisions. Advocate for their care and specific, and often unique needs. And to generate funds to sponsor research that may improve the ability to diagnose and treatment sarcoma. We want the sarcoma community to Unite. Together we can have a greater impact and change the course of sarcoma for future patients and families.
"Over roughly 15,000 people in the United States will be diagnosed with sarcoma in 2017 alone.
Non-for-profit organizations like Sarcoma Strong raise awareness and necessary funds for researching and improving treatment methods."
Why We Started The Run?
After seven years practicing as the Capital Region of New York’s only Musculoskeletal Oncologist, I had a desire to do more for my patients than just help with making their diagnosis and implementing their treatment. It became apparent to me that each of these patients was on a journey with sarcoma and I needed to be of service to them in all phases of this journey. Being a rare form of cancer, many of these patients and families had nowhere to turn and limited access to helpful information. Many had never heard the word sarcoma. Patients quickly learn the unique problems and concerns sarcoma and it’s treatment bring to their lives.
From this, a sarcoma awareness picnic was born in 2011. Patients with sarcoma and their families and friends gathered together to enjoy some time outside of a doctor’s office, sharing stories and experiences. The media got wind of what we were doing and this helped with our mission to increase awareness of sarcoma throughout our community.
After a few years of these gatherings, there was still a void. Something was missing. We were advocating for our sarcoma families, we were increasing awareness of this rare disease, but we were not making an impact in new discoveries or in the research arena. It was at this point we decided to organize our first Sarcoma 5k Run/Walk during the summer of 2014. Funds raised during our inaugural run went to the Liddy Shriver Sarcoma Initiative and supported sarcoma research. Bruce Shriver was an inspiration to me when I wanted to start a picnic and eventually the run. With over 300 participants, ~$12,000 raised to fund research, and a majority of local news channels broadcasting our event we felt the impact of what we had started. As we were at our beginning efforts to fund research the Liddy Shriver Organization was in their final chapter. This left us with a big question. Who would raise money for/with to help fund sarcoma research?
As a member of the Musculoskeletal Tumor Society (MSTS), an organization comprised of leaders in the field of Musculoskeletal Oncology, I felt who better to form a collaboration with than MSTS. Michelle Ghert, MD, head of the research committee, and Richard Terek, MD, President of the MSTS both were instrumental in establishing this collaborative project. From this, the Sarcoma Strong/MSTS Research Grant was formed. With a stronger focus on obtaining corporate level sponsorship, we were able to generate enough funds to sponsor a $100,000 grant after the success of the 2015 and 2016 events.
The momentum is growing. The mission is the same. Fund lifesaving and life improving research for our sarcoma families. Increase awareness of their rare disease with its unique concerns and advocate for them. Help support our goals by participating in one of our events, volunteering or donating.
What Have We Done So Far?