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Karen Wyckoff Rein In Sarcoma Fund
A Fund for Sarcoma Cancer Research, Education and Survivor Support

Rein in Sarcoma

Cafesjian's Carousel and the New Marjorie McNeely Como Park Conservatory
Monday, July 24, 2006 - 6:00 to 9:00 pm
presented by Friends of Karen Wyckoff

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iSPAN

International Sarcoma Patient Advocate Network

Over the last five years, multiple groups and foundations, including the Karen Wyckoff Rein in Sarcoma Fund (KWRISF), have sprung up in the sarcoma community. For the first time ever representatives of many these organizations met in November for a Sarcoma Collaboration summit. The following report was written by KWRISF Board member, Mike Trucano.

iSPAN GroupPicture - See description Below
Click for Larger Picture

On November 19, 2005, KWRISF Board Members Dr. Ed Cheng Mike Trucano and his wife Doreen, attended an inaugural meeting of Sarcoma Patient Advisory Groups at the Boca Raton Bridge Hotel in Boca Raton, Florida. The meeting was scheduled to coincide with the CTOS (Connective Tissue Oncology Society) annual meeting. The participants consisted of sarcoma patients, survivors, persons who had lost a loved one to Sarcoma, professional NGO staffers, a couple of doctors and other interested persons.

There were approximately 30 people in attendance as representatives of 14 of the 22 Sarcoma cancer organizations that had expressed interest in engaging in some sort of collaborative activity.

Given the limited time available, the objectives of this inaugural session were relatively modest.

A decision was made to call the loose organization of advocacy groups by the name of iSPAN (International Sarcoma Patient Advocate Network).

A principal objective endorsed by everyone was to establish a mechanism whereby each of the organizations could learn what other organizations were doing on an on-going basis, with the hope of facilitating collaborative activities on appropriate initiatives.

A subgroup was delegated the task of creating a mission statement for iSPAN. The mission statement will be circulated among the participating organizations for input before it is submitted for approval. June 1, 2006 was set as the deadline for this task. A second area of significant discussion was patient and family education. One of the organizations has prepared an initial version of a handbook that it distributes to sarcoma patients and family members in its geographic areas. This notebook, the Sarcoma Survivor Starter Notebook, was created by the Amschward Sarcoma Cancer Foundation. Member organizations were asked to review this notebook and provide feedback for improving to Amschward. Click here to download PDF of Amschward Sarcoma Cancer Foundation Sarcoma Survivor Notebook.

(Note: a KWRISF work group is being established to create a comparable handbook for sarcoma survivors in the upper Midwest.)

The second handbook, titled “Sarcoma for the Newly Diagnosed,” is in process and an initial draft will be circulated to group members in February or March for review and input. It was agreed that we would have a 3-month timeframe for comments and input, with the object of providing a final draft by the end of the summer of 2006.

The Minnesota-based Caring Bridge website organization was discussed, and we agreed to contact Caring Bridge about inputting information about its services into these notebooks. (Note: a KWRISF work group working to establish a collaborative relationship with Caring Bridg.)

Some of the larger organizations were strongly urging cooperative efforts toward a national awareness campaign to be undertaken in June 2006. It is clear that several of the organizations hope to tap into the funds of the other organizations to fund advertising and legislative initiatives. These concepts were largely unformed and will need to be formulated and articulated for consideration at future meetings.

As a final action plan, the organizations agreed to consider establishing links on their websites to the websites of the other organizations to provide greater resources for persons looking for information about sarcoma and sarcoma-focused organizations.

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.

Description of People ISPAN Group Photo

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

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