Sarcoma Advocacy Organizations Meet in Chicago

SARC Meeting

Friday, June 2nd was an interesting and invigorating day for Rein in Sarcoma Board Members, Dr. Larry Seymour, Sue Wyckoff and Pete Wyckoff. In the morning, we attended the SARC meeting. Sarcoma Alliance for Research through Collaboration (SARC) is a group of doctors and researchers who are working to provide a collaborative infrastructure to make progress in the prevention, diagnosis and treatment of Sarcoma. We heard speeches on topics including two on using Genomic information in sarcoma treatment. There was also a section on Resources for Investigators. Finally, there were reports on five clinical trials that are being run by SARC. About 300 doctors and researchers from around the world attended, including several of our Minnesota doctors.

RIS Board member, Larry Seymour, MD, reflected on the meeting: “Among other things (i.e., interesting papers) the need for pooling information and developing data banks came across loudly. It was a good meeting, and hopefully the start of a truly national sarcoma organization. During the meeting, Dr. Lawrence Baker, one of the founders of SARC, held some researchers’ feet to the fire, challenging assumptions, and interpretation of results. It appears a lot is in good shape with SARC.”

RIS Board member, Dr. Larry Seymour listening to Dr. Scott Okuno, Mayo Clinic

Meeting with Sarcoma Organizations

Sarcoma Organizations networking session

In the afternoon SARC and Rein in Sarcoma collaborated to run a phone and web video conference with Sarcoma organizations around the country, focusing on their programs and areas in which all of the groups can collaborate. Each group submitted a one-page summary of their work before the conference and gave a two-minute summary of what they were doing. Important conversations began during this call about ways to increase collaboration of sarcoma organizations across the country.

In the evening SARC and Rein in Sarcoma collaborated to sponsor a dinner for groups that were at the conference. The same format as the afternoon meeting was used. In addition, many lively personal conversations happened and many of the groups found common ground. The consensus of the two meetings was that this was a good start and that the groups wanted to meet several times a year by phone.

All the work that Pete Wyckoff and Denise Reinke from SARC put in over the previous months seemed to bring about genuine interest in real collaboration. The meetings also served to heighten our sense of urgency and passion about making strides in sarcoma education, patient support and supporting ways to find a cure. This was the largest meeting of sarcoma organizations in more than a decade.

The groups that attended one or both meetings:

Angiosarcoma Awareness - Corrie Painter
Azadeh Khatibi, MD, MS, MPH
Chordoma Foundation - Josh Summer
The EHE Foundation (Epithelioid Hemangioendothelioma) - Jane Gutkowvich
FACTOR 2017 (Osteosarcoma) - Theresa Beech
GIST International - Becky Owen, Nancy Berezin
Life Raft Group (GIST) - Norman Scherzer, Michelle Durborrow, Jim Hughes
National Leiomyosarcoma Foundation - Annie Achee
National Cancer Institute - Brigitte Widemann
Northwest Sarcoma Foundation - Lara Davis and Jason Sears
QuadW Foundation - Mac Tichenor, Lisa Tichenor, Lauren Jordan
Rein in Sarcoma - Dr. Larry Seymour, Sue Wyckoff, Pete Wyckoff (convener)
SARC - Denise Reinke (convener), Charlene Calcagno
Sarcoma Alliance - Eric Lane
Sarcoma Foundation of America - Mark Thorton, Michaela Mueller
Sarcoma Oma Foundation - Gary Wiener
Slifka Foundation - Allison Sole

In addition, several other sarcoma organizations provided background information on their work and indicated their desire to work with this nationwide sarcoma collaboration effort. RIS and SARC are now in the process of gathering all the many ideas generated at these meetings and planning next steps, including convening regular nationwide conference calls of Sarcoma advocates.