Sarcoma Patient Advocacy Coalition

Working Together Image

Sarcoma cancers are rare cancers with all too few organizations working to support sarcoma patients, educate the public and the medical community and to fund research for cures. There are less than a ten broad based sarcoma organizations (such as Rein in Sarcoma) in the country and several dozen organizations supporting specific sarcoma sub-types (such as Osteosarcoma, Rhadosarcoma or Leiomyosarcoma).

For decades these organizations have labored side-by-side but never in a full coalition. Because of its rarity, many people, including primary care medical personnel, are unfamiliar with sarcoma. Funding for research is scarce and there is little community support for the patient with sarcoma. None of the multiple grass roots organizations for sarcoma have the sufficient funds or volunteers to find solutions to all of the problems associated with sarcoma.

All of that changed through the leadership of Pete Wyckoff of Rein in Sarcoma, and Denise Reinike of SARC, resulting in the formation of the Sarcoma Patient Advocacy Coalition (SPAC) in April 2018. SPAC member organizations recognize that collaboration and cooperation could make our individual efforts stronger. Working together, we will leverage our collective strengths to make a greater impact in meeting the needs of the sarcoma community locally and across the country.

SPAC has been formed to bring together these groups to work on common goals. SPAC is open to all non-profit sarcoma organizations. Membership is organization based and does not have individual membership. All SPAC leadership serve in a volunteer capacity. SPAC is engaging its membership to identify collective projects that will leverage the strengths of multiple groups.

SPAC’s current Work Group is concerned with sarcoma education, both to the medical community and to the public. It is chaired by Mitch Achee, MD, a Leiomyosarcoma survivor, and staffed by Pete Wyckoff.

Charter member organizations of SPAC (as of 6/19/2018) are:

 

The Alan B Slifka Foundation logo

Angiosarcoma Awareness Inc logo

Desmoid Tumor Research Foundation

 

EHE Foundation

 

Life Raft Group logo

 

LMSDR logo

 

 

National LeiomyoSarcoma Foundation logo

Paula Takacs Foundation logo

Rein in Sarcoma logo

 

Sarcoma Alliance logo

 

SARC logo

Sarcoma Foundation of America

Summer's Way logo

Quad W Foundation logo

A SPAC website, which will primarily serve affiliated organizations, is under development.

For more information about SPAC and current activities, contact either of SPAC’s co-conveyors:

Denise Reinke - (SARC) dreinke@sarctrials.org  (734) 355-3767
Peter Wyckoff - (Rein in Sarcoma) wyckoffris@yahoo.com (612) 807-0842