Over a dozen sarcoma advocacy groups, some which focus on specific sarcoma sub-types and those covering all types of sarcoma, met in Chicago on June 1, with the purpose of forming a coalition to “achieve more – together.” The purpose of the Sarcoma Patient Advocacy Coalition (SPAC) is not to replace any organization, but by working together, the individual organizations hope to leverage their collective strength to make a greater impact in meeting the needs of the sarcoma community. All of the groups in attendance, by phone or in person, agreed that this idea has promise through the continuum of the sarcoma journey, from diagnosis and treatment, to survivorship and quality of life issues.
The group decided that concentrating on a just a few areas would be the best use of available time and talent. In addition to the Educational Work Group, the coalition is in the process of determining the focus of a second work group. All work groups will be made up of representatives of the member organizations.
The Sarcoma Patient Advocacy Coalition was formally presented to over 300 sarcoma cancer researchers and experts at the semiannual meeting of SARC, in conjunction with ASCO. The announcement was made by RIS co-founder and co-conveyor of SPAC, Pete Wyckoff, and Annie Achee, President of the National LeioMyoSarcoma Foundation. The response by the doctors and researchers was positive as many asked good questions and shared their ideas at the break.
The SPAC Education Work Group, led by Dr. Mitch Achee, will focus on educational programs that may be enhanced or developed through SPAC on behalf of affiliated organizations. During the June 1 meeting, several organizations presented their current education programs. Two areas of focus were chosen for action: a pathology course now offered by SARC will be offered on the SPAC website, currently under development; the other area of focus will be research on expanding the use of virtual tumor boards, as is already in use by the Desmoids Research Foundation. Other projects will be determined at future monthly meetings.
The day ended with a lot of enthusiasm and excitement from the sarcoma advocacy groups in attendance. Several more organizations have joined since the June 1 meeting. SPAC will have quarterly meetings of all the organizations (typically by conference call), and the work groups will meet on the schedule determined by their chair and members. Read more about SPAC and its member organizations.
RIS Board President, Deb Cossette, is RIS’s decision making representative to SPAC. Naomi Bowman, RIS Health Programs Coordinator, and Sue Wyckoff, RIS Education Committee Chair, are representing RIS on the SPAC Education Work Group. Pete Wyckoff, Denise Reinke, President of SARC, Mitch Achee and Annie Achee make up the current SPAC Steering Committee.
RIS is proud to have helped lead the way to a coalition that will truly “ ACHIEVE MORE – TOGETHER.”