The Life Raft Group held a training for GIST Mentors (formerly known as the GIST Peers) from October 31st – November 1st, 2019 at LRG headquarters. An LRG GIST Mentor helps patients and their caregivers through their GIST journey – from receiving a diagnosis to navigating different resources of information, support, treatment options, side effects, etc. A GIST Mentor is a GIST survivor or caregiver who can offer you understanding and empathy.

Seven mentors attended the training: Santy DiSabatino (Director, GIST Mentor Program), Carolyn Dewalt, Julie Durkee, Eric Lindberg, Marlene Nei, Kay Stolzer, and Rob Taylor. The group met with LRG staff over a Halloween lunch and some games. After lunch, the first order of business was to change the name of the program from GIST Peer to GIST Mentor.  The group, comprised of patients & caregivers, felt that mentor was a better name for what we are trying to accomplish with assisting fellow GISTers. By definition a mentor is an experienced and trusted advisor, therefore being called a GIST Mentor felt more meaningful to the group.

A GIST Mentor is a person who has knowledge from their own experiences with GIST either by having  it or being affected by it through a loved one, and has received training to be empathetic and understanding in order to help those dealing with GIST. At the end of day one, the group received an in-depth explanation of The Life Raft Group’s mission and history, GIST Prime, the LRG Patient Registry and listened to a GIST Expert Training led by David Josephy, of The Life Raft Group Canada.   

On day two, the mentors received training on Self-Care for the Support Team which was led by Health and Life Coach, Sheetal Muhlon, Communication Training from Santy DiSabatino, and a session on Dealing with Anxiety & Uncertainty When Faced with a Cancer Diagnosis: How Do I Help the Patient/Caregiver presented by social worker, Hannah Marcus. The group created a mission statement, discussed the key points to a successful mentor support program and relationship with mentee, and developed an outline for a training manual for new mentors. They also suggested additional requirements for becoming a GIST Mentor.

The Training ended on Saturday with a certificate ceremony followed by a NJ Support Group meeting where the mentors shared their GIST journey stories to local NJ patients and caregivers. The GIST Mentors will continue meeting virtually to further refine the program and  to receive additional support to further assist those on their own GIST journeys. Stay tuned as this group of amazing volunteers spread their wings to help so many in our LRG community.

GIST Mentor Day

Left to right: Mentor: Julie Durkee, LRG Senior VP Laura Occhiuzzi, Mentors: Rob Taylor, Carolyn Dewalt, Eric Lindberg, Marlene Nei, and Kay Stolzer, LRG Outreach & Engagement Team Members: Diana Nieves, Angela Edson, Front: National GIST Mentor Program Director Santy DiSabatino

Cancer is a lonely disease, and GIST even more so. I felt so isolated and alone the first year, even with my husband, who has steadfastly been by my side, my wonderful sons, and dear friends. I couldn’t find anyone like me.  Life Raft first gave me tools to learn about my cancer, empowered me to seek out a specialist, and share my story with people who “knew.”  You have created a massive tikkun olam* in the GIST community.  GDOLS, Life Fest, and our new Mentor program are not only educational tools, they allow us to connect, become part of a community; to move past our own struggles and reach out to others. The Mentor training will enable us to be better equipped to assist others in their journeys. Giving back helps us heal ourselves. Our amazing group became instantly close and lifelong friends.  Thank you for the difference you and your staff have made in my life. You have all become family.”
GIST Mentor Kay Stolzer

View GIST Mentor Training Photo Gallery

*tikkun olam  A Hebrew phrase which is modernly and broadly understood as the notion of “repairing the world” through human actions. Humanity’s responsibility to change, improve, and fix its earthly surroundings is powerful. It implies that each person has a hand in working towards the betterment of his or her own existence as well as the lives of future generations.

Diana Nieves
Author: Diana Nieves