A collaboration summit of directors of various sarcoma advocate organizations convened on November 19, 2005 in Boca Raton, Florida, for three hours before the start of the 11th Annual Connective Tissue Oncology Society (CTOS) Meeting. The group launched a collaborative alliance called, International Sarcoma Patient Advocate Network (iSPAN).
Over the last five years, multiple groups and foundations have sprung up in the sarcoma community. The meeting was a beginning attempt to support and strengthen all our mutual efforts and effectiveness.
For the first time, 27 key leaders representing 14 different foundations came together to:
- Learn about each organization’s unique role, efforts and contributions
- Establish a communication network between all groups
- Discuss the most current developments, issues and needs for advocates
- Define mutual goals and collaborative strategies
Building a Network
A pre-meeting survey and phone interviews solicited opinions and suggestions from those who could not attend, as well as those who did. All participants unanimously expressed great support for networking and desired continued communication among the sarcoma foundations.
A directory of 50 sarcoma advocate organizations & foundations has been drafted and distributed among the groups. The directory helps to identify each other’s services. Not only can we now better direct patients to get the specific help they need, but also support each other’s efforts by adding all the website links on our own.
A task group was also formed to plan future annual iSPAN meetings and communications.
Issues for Mutual Collaboration
A detailed list of needs and issues for possible collaborative work was generated and prioritized by the pre-meeting survey. This list served as a catalysis for discussion and decision-making. Three main categories emerged:
- Research–increasing studies/clinical trials
- Patient education, support and outreach
- Standards of care for all sarcoma treatment
Some of the focus areas within each of these categories that were discussed are:
1. Research–increasing studies/clinical trials
- Funding for sarcoma research Legislative lobbying
- Sarcoma tissue bank for researchers
- Sarcoma patient registry for researchers
- On-going collaborations with researchers & advocates
- Drug Development Incentives for pharmaceutical companies
- Expediting clinical trials
- Increased participation
- One source to find sarcoma trials
2. Patient education, support and outreach bullet Support groups at hospitals
- Treatment by a sarcoma team
- Shared materials, resources list & guidelines in all medias/languages
- Education for advocate organizations
- PR campaigns for awareness
3. Standards of care for all sarcoma treatment
- Physician education for early & correct Dx
- Updated standards for all doctors
- Better training in medical school
- Recruitment & training of future sarcoma "EXPERTS"
Two iSPAN Task Forces were formed and created goals with concrete action plans for the next six months.
1. Funding Research/Legislative Affairs Task Force
- Educate others on our wish to prioritize legislative initiatives
- Define our network of contacts
- Define our "fundables"
2. Patient Education, Support and Outreach Task Force
- Develop a "Sarcoma For The Newly Diagnosed" booklet based on the Sarcoma Alliance's draft document, to submit to the NCI
- Develop a "Sarcoma Patient Notebook" based on the Amshwand Sarcoma Foundation's model
- Organize a national sarcoma awareness campaign & congressional proclamation of Sarcoma Awareness Month for June 2006
Those interested in participating on either of these iSPAN Task Forces are encouraged to contact me. From the enthusiasm expressed by all advocates, researchers, oncologists, survivors and caretakers, we know that this network holds tremendous potential for joint projects and an unified voice on behalf of all sarcomas. We have taken the first steps of meeting each other, defining our common goals and committing to on-going communication and partnership. To join iSPAN or to be added to the directory of sarcoma advocate organizations and foundations, please contact me.
The creation of iSPAN is to the credit of our advocate leaders, who are proud and passionate about their work, and wish to have an even greater impact on saving lives. Special thanks goes to Deborah Buks for her facilitation help and to the Sarcoma Alliance for providing the meeting room, food and printing of the directory.
Editor's Footnote: The entire sarcoma community owes Sharon its sincerest thanks for finally making this often talked about meeting actually happen. She undertook numerous information gathering tasks and analyzed the data and presented it in an extremely useful way. She and Deborah complemented each other nicely during the meeting. All this helped enormously to make the meeting a success and result in the formation of iSPAN and its Task Forces. This simply would not have happened without Sharon's dedication to and skill in bringing it about.