Gastrointestinal Stromal Tumor (GIST) is a rare sarcoma that lacks public knowledge and funding, which makes research difficult. The mission of the GIST Cancer Awareness Foundation is to provide informational support to GIST patients and their families through established community support groups; increase public awareness of GIST using private and public media tools; and to raise funds to award research grants for the expanded investigation of GIST.
The GIST Cancer Research Fund (GCRF) is a non-profit 501(C)(3) charity and was founded by Tania and Robert Stutman to provide support to the growing community of GIST patients and caregivers throughout North America. GCRF’s goals are to provide patient outreach, generate constant awareness for GIST, support research, and raise funds for continued research to expand the access and development of important life-saving therapies. The GIST Cancer Research Fund is an organization comprised of either actual GIST patients or caregivers with family members who currently live with or succumbed to the cancer, on the Board of Directors and managing the organization. GCRF’s foundress, Tania Stutman, has passed her tenth year as a GIST patient and strongly acts as Chairperson of the fund. All the members of GCRF are literally fighting for their lives or the lives of loved ones. Together, the GCRF team is committed to eradicating this devastating cancer through increased awareness and furthering the cause for research that is absolutely essential for GIST’s cure.
GIST Support International (GSI) is an all-volunteer, non-profit organization that reaches out to GIST patients and their families and friends to provide education and support. GSI maintains an extensive up-to-date web site that includes clinical trial information, an expert medical opinion series, called "Ask the Professional", tips for patients and a unique interactive WIKI devoted to GIST. Our GSI members number over 1100 people from around the world who communicate and help each other with information and support through active listserves. GSI has a specific pediatric GIST section and sponsors the only pediatric GIST listserv (initiated in January 2007) currently on the internet. This listserv is devoted specifically to pediatric GIST patients and their parents and/or loved ones. For information and research about pediatric GIST, visit http://www.gistsupport.org/about-gist/pediatric-gist-summary/. For GSI resources specific to young patients, please visit http://www.gistsupport.org/about-gist/sdh-deficient-amp-wildtype-gist/links-for-young-patients/
For questions on GSI's pediatric section, contact: Phyllis Gay, PT, Pediatric Coordinator, GSI at mailto:email@example.com
The mission of the Global GIST Network is to encourage and support the creation of GIST patient resources by providing a forum for patients to identify the support available in a given country or for a given language and to facilitate information exchange, mutual support and advocacy.
The Life Raft Group (LRG) started in 2000, when a handful of patients diagnosed with Gastrointestinal Tumor (GIST) in the early clinical trials for Gleevec began sharing their experiences online. Since that time, we have grown to become an international organization with a presence in over 167 countries, with over 2,000 members in our Patient Registry.
We have become a leader in both GIST research and patient advocacy and are a recognized source of information provided to patients and caregivers and the medical community through our website, social media, webinars, newsletters, LRG Science Bulletin, educational materials, GIST Days of Learning and one-on-one consultations by our Patient Registry Associates.
The mission of the Life Raft Group is to enhance survival and quality of life for people living with GIST (Gastrointestinal Stromal Tumor) through patient-powered research, education and empowerment and global advocacy efforts.
The LRG vision is to champion patient-powered science and drastically increase long-term survivorship for all cancer patients.
To accomplish this, we rely on four key pillars:
- Leveraging the patient perspective to drive innovative solutions in cancer research
- Educating and empowering patients to take a larger role in their care
- Accelerating research outcomes through collaborative efforts
- Increasing access to effective treatments worldwide
Patients, caregivers and healthcare professionals can contact The Life Raft Group at 973.837.9092 for free information, resources and support. More information can be found on our website: www.liferaftgroup.org.
Please contact us, if you would like us to add a link to your organization.