GISTer Dina Wiley has been an integral member of our Life Raft Group family and embodies all the best qualities of a patient advocate. At the conclusion of 2022, Dina will step down from her post as SoCal representative.
Dina’s insights and wisdom were gained from her own GIST experience, including a long period of misdiagnoses, and her determination to advocate for herself has enriched the lives of many GIST patients.
Once correctly diagnosed with GIST, Dina connected with Floyd Pothoven, LRG’s former SoCal representative and she began attending his local support group meetings. Those meetings were significant, because as the members shared their experiences, she realized that she was no longer alone. She saw these meetings as a pivotal point in her fight against GIST. Dina’s desire was and always has been to keep the flame burning by providing opportunities for others with GIST to be informed and share their stories while they offer and receive support.
She became our SoCal state representative in 2011 and has been instrumental in providing support for the newly diagnosed as well as aiding in the planning and execution of GDOLs and Life Fest events. Though she is stepping down from the leadership of the SoCal support group, Dina will always remain a valued member of our GIST family.
When I attended my first LRG support meeting with others who had GIST (2003), I was recently diagnosed and very scared. I saw that I was not alone, and by hearing what they were going through and how they handled it, I gained a feeling of security. There are others! We can help each other! That gave me strength. I wanted to provide that same sense of community to others with GIST.
Once I became Support Group Leader for SoCal I held group meetings in different parts of Southern California (at that time, we had a NoCal leader, as well). In-person meetings had the benefit of seeing each other, spurring on camaraderie among us. I found a sense of worth when talking to newly diagnosed patients, spouses, and parents who just joined the LRG. This was all so new to them. They were beyond scared. By just listening to them speak, cry, ask questions, I could soothe their fears and provide suggestions. I knew that this was time well spent.
Eventually the NoCal leader retired, and I took over as State Leader for California. Due to the pandemic, we changed to Zoom meetings, which had the benefit of allowing people hundreds of miles away to participate. This was made possible by Laura Occhiuzzi, Diana Nieves, and Jessica Nowak, who ran these Saturday morning Zoom meetings from New Jersey.
In closing, I would like to thank the Life Raft Group for their support and care over the years. Each person with whom I worked has been professional, knowledgeable, and always helpful. The volunteer work that I have done has truly been rewarding. I found a sense of purpose when I found the Life Raft Group.
-Dina Wiley
