iSPAN: the International Sarcoma Patient Advocate Network

by

Sharon Anderson, MSW

LMS Research Advocate & Survivor

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 11^th Annual Connective Tissue Oncology Society (CTOS) Meeting. The group launched a collaborative alliance called, International Sarcoma Patient Advocate Network (iSPAN). For background on this meeting, see the "The State of Sarcoma Advocacy" that appeared in April issue of ESUN and "A Gathering of Advocacy Groups" that appeared in the October 2005 issue of ESUN.

iSPAN Attendees. Click on the photo to enlarge it. The lists below are given in left to right order

Front Row: Ginger Kyle (ASCF), Deborah Buks (SARC), Sharon Anderson (LMS Surviror), Suzanne Kurtz (NLMSF), Yvonne Blixt (GSI), Tricia McAleer (LFG)

Second Row: Beverly Shriver (LSSI), Marlene Portnoy (DTRF), Joan Darling (COG), Louise Gallun (SFA), Doreen Trucano (KW), Dave Marsh (KACF), Mark Thornton (SFA), Ellen Silver (SA)

Back Row: Susan Erickson (JHYSF), Chris Yates (JHYSF), Dave Murphy (SA), Penny Duke (GSI), Mike Trucano (KW), Tom Sawrtz (LSSI), Arthur Beckert (SA)

Bruce Shriver (LSSI), who attended the meeting took the photo and does not appear in it. Additional participants missing from the photo are: Karen Murphy (NWSF), Edward Chang (KW), and Sara Rubinoff (LFG). Marie Podevin and Matthieu Lemchand (SOSD, France) were very much involved in the networking, but missed the meeting due to a flight delay.

For a discussion of the "Prayer Flags" that appear behind the attendees, see the article "Prayer Flags for Sarcoma" that appears in this issue of ESUN

Organization Abbreviations Used in the Figure Caption

A Beginning

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. You can view and download a copy of the directory in PDF format by clicking here.

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: 

1. Research–increasing studies/clinical trials

2. Patient education, support and outreach 

3. 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 Co.
	Expediting clinical trials Increased participation One source to find sarcoma trials

2. Patient education, support and outreach 

	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”

Commitments

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.

 

We encourage those interested in participating on either of these iSPAN Task Forces 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.]

V2N6 ESUN Copyright © 2005 Liddy Shriver Sarcoma Initiative.