Update on GIST Support International

In the spring of 2002, a small group of patients and caregivers shared a dream about a free and open support group that would welcome anyone with an interest in gastrointestinal stromal tumor (GIST), a sarcoma that catapulted from obscurity to notoriety after the discovery that the chronic myelogenous leukemia (CML) drug imatinib (Gleevec) could also treat GIST.

GSI Logo

Through a truly grass-roots effort, GIST Support International (GSI), began to take shape as a new support group and went live on the Internet in March 2003. Since that time, GSI has grown to be the largest GIST patient group in the world with over 1000 members in over 28 countries. Today, the GSI website is the source of the most up to date scientific and medical information about GIST to be found in one place. It is also full of patient and caregiver information about coping with cancer from diagnosis on. GSI has remained committed to its original ideal: an all-volunteer organization (no salaries) whose members are not asked to provide personal information or to make donations to the organization.

GSI seeks to empower each individual touched by GIST to be his or her own best advocate. GSI provides support and education to anyone who needs help: patients, caregivers and family members. Our website includes such a wealth of GIST information that many health professionals also find it a useful reference.

Members communicate with each other on a daily basis through an interactive, state-of-the-art listserv system which was donated to GSI by LSoft. Through online interactions, patients and caregivers can stay abreast of the latest clinical trials and medical information pertaining to GIST. Sharing side effects, success stories and drug failures, patients are empowered to seek the best care available for treatment of their disease. The sense of community in our online group counteracts the isolation of having a rare disease.

GSI also provides a separate listserv for pediatric GIST patients and those who developed GIST prior to age 30.The volunteer list moderator, Phyllis Gay, is the mother of a pediatric patient as well as a physical therapist. Our pediatric list currently has over 50 members who share information about this very rare subset of GIST.

Another way that members of GSI communicate with each other is through our GIST Support WIKI, which is exemplary among patient support groups. We have several coordinators who update this daily using information that is shared on the listserv and found elsewhere. Anyone is welcome to contribute to this format.

Volunteers from GSI often attend relevant medical conferences and pharmaceutical meetings. GSI has earned the respect of many medical professionals, aided in part by the face-to-face interactions during these meetings. Our reputation as a fair and impartial GIST support group helps ensure that these professionals are willing to help when we need guidance or assistance. Many GIST experts and other experts in different fields have written articles for our Ask the Professional series on our web site .

Finding clinical trials is of utmost importance to the GIST community, especially for those patients for whom the two approved treatments for GIST have failed. GSI lists all current trials on our web site and maintains a link to Emerging Med for additional trial updates.

100 Questions and Answers About GIST

To further the education of those interested in GIST, GSI has developed a free brochure about GIST that is easy to understand. Individuals may request copies, and physicians are encouraged to order supplies for patient education. We also participated in the Information Television Network series, Healthy Body, Healthy Mind, to produce a documentary and DVD about Targeted Cancer Therapies. Finally, one of GSI’s original founders, Marina Symcox, PhD, who is a biochemist and one of the first Gleevec trial patients, has co-authored a book about GIST with two leading experts in GIST, Dr. Ron DeMatteo and Dr. George Demetri. This book, 100 Questions and Answers About GIST, has been an invaluable help to GIST patients, caregivers and the medical community.

GSI members are active in various ways to raise awareness of GIST and Sarcoma. We have had representatives from GSI ride in the Team Sarcoma events for the last two years in both Denmark and Vermont. Last year, another GSI member, Mike Prozan, cycled 1000 miles in 10 days to raise awareness and funds for GIST research. This year, Brad Clark is planning to join the Pan Mass Challenge bike ride in Boston.

GSI is organized on the concept of working committees with members coming up with both ideas and the energy to carry them out. Some of the programs that we have implemented are:

  • Greeters: volunteers who write to members who sign on to our group to issue a personal welcome and offer help
  • Healing Through Music: GSI member Bob Spiegel has accumulated a vast musical library for those who are interested in musical therapy during their GIST journey
  • Pediatric GIST Committee: A PediatricGIST Listserv
  • Phone Pals- members who are willing to communicate by telephone, especially to those without Internet access
  • Science Committee: A group (including scientists, researchers and physicians) who educate our members of the latest information about GIST. Coordinator Julie Royster, PhD does most of the writing for GSI’s website
  • Web Site committee: volunteers who keep the web site up to date

As ever, GIST Support International continues to look to its membership for new ideas and welcomes more volunteers. Some future projects include translations for the web site and a newsletter.