FOR IMMEDIATE RELEASE
Portland, Maine — January 31, 2019 – Those dealing with sarcoma know that resources and support can be difficult to find. Members of the newly formed Sarcoma Coalition are working together to change that.
The Sarcoma Coalition is a nonprofit collaboration of sarcoma advocacy organizations from around the country working toward a common purpose: to provide resources and support for those dealing with sarcoma – from patients and their families to allies in the research and medical communities.
“Because of the rarity of this cancer, many people – including primary care medical personnel – are unfamiliar with sarcoma,” says Pete Wyckoff, co-chair of the Sarcoma Coalition steering committee, and Co-Founder of Rein in Sarcoma.
While united in their commitment and efforts, each Sarcoma Coalition member organization offers its own unique areas of advocacy, resources and services. Patients or caregivers seeking information about specific areas of sarcoma support will find more information and a list of Sarcoma Coalition member organizations and their focus areas at sarcomacoalition.org.
“Our Sarcoma Coalition member organizations are working together to support sarcoma patients, educate the public and medical community, and collaborate to fund research to find better treatments and ultimately a cure for this rare cancer,” says Denise Reinke, co-chair of the Sarcoma Coalition steering committee, and President & CEO of SARC.
The 16 current members of the nonprofit Sarcoma Coalition are (in alphabetical order): Angiosarcoma Awareness, Inc.; Desmoid Tumor Research Foundation; EHE Foundation; Focus on Rhabdo; Leiomyosarcoma Support and Direct Research Foundation; Life Raft Group; LMS – National Leiomyosarcoma Foundation; Northwest Sarcoma Foundation; QuadW Foundation; Rein in Sarcoma; SARC; Sarcoma Alliance; Sarcoma Foundation of America; Slifka Foundation; Summers Way Foundation; and The Paula Takacs Foundation for Sarcoma Research. The work of the Sarcoma Coalition is overseen by its Steering Committee: Annie Achee, Lisa DeYoung, Rich Rumsey, Peter Wyckoff and Denise Reinke.
Nonprofits with a focus on sarcoma interested in joining the Sarcoma Coalition can contact the organization for information.
What Is Sarcoma?
Sarcomas are cancers of the bony skeleton (the skull, vertebrae, ribs, and extremities), and also the muscle and other tissues attached to, supporting, or joining those bones. Sarcomas can occur in people of all ages – newborns, infants, children, young adults and mature adults. Although there are many different types of sarcomas, it is still a very rare disease. Sarcoma accounts for 1% of adult cancers and 15% of childhood cancers. Therefore, few physicians have experience in dealing with sarcomas, so it is not uncommon for it to be difficult to arrive at a diagnosis of sarcoma. This fact is simply a reflection of the rarity of this cancer.