GDOL San Diego 2022
Our most recent GIST Days of Learning (GDOLs) were in-person again, as Deputy Director, Laura Occhiuzzi and Senior Director of Outreach and Engagement Diana Nieves traveled to San Diego and Miami to meet with GIST experts and members of our community. A GDOL is a free one-day event to help patients and caregivers learn more about this rare cancer, find support, and enhance their knowledge base to help them navigate their cancer journey.
In September, Laura and Diana attended a dinner at Season 52 restaurant that was hosted by Moores Cancer Center at UC San Diego, site of the GDOL. Joined by SoCal Leader Dina Wiley and her husband Sam and other patients and caregivers and the presenters, it was an opportunity to socialize before the busy day ahead. Sixty patients and caregivers participated in the GDOL on Saturday, September 24th at the beautiful Moores Cancer Center campus. There were some long-time members and some new ones, who experienced all that a GDOL has to offer. The gorgeous sunny day began with a GIST Do It Walk around the beautiful grounds of the institution. Presentations included:
- GIST 101 by Paul Fanta, MD
- SDH-deficient GIST Update: Bench to Bedside SDH-deficient GIST Research by Jason Sicklick, MD, Temozolomide Trial Update for SDH-Deficient GIST by Adam Burgoyne, MD, PhD and Selective Internal Radiation Therapy (SIRT) for SDH-Deficient GIST Liver Metastases by Zach Berman, MD
- Fluorescence-Guided Cancer Surgery by Michael Bouvet,MD
- Current and Emerging Clinical Trials for GIST by Michael Heinrich, MD
- Personalized Precision Medicine and the N-of-One Approach to Cancer Therapy by Jason Sicklick, MD
Supportive Oncology Panel with Kathryn Winters, MD discussing Symptom Management and Kristine Zournas, RD discussing Nutrition.
A support group was led by Dina Wiley, PhD, Southern California State Leader. One of the highlights of the GDOL was the discussion of how to support research and included the presentation of a check for $25,000 to Jason Sicklick from the LRG to support his research lab. Laura commented, “We are always so grateful to our medical community who give of their time on weekends to present at our GDOLs. I walk away from these weekends with a renewed sense of optimism. Thank you to the staff of UCSD for helping us organize the event. We couldn’t have done this without them.”
GDOL Miami 2022
In the evaluation forms, participants strongly agreed that they have a greater understanding of GIST, treatments, and surgical options after having participated
in this GDOL. Also an opportunity for fundraising efforts, over $5K in individual donations were raised, with one member joining our GEMs program. On the
road again in November, Laura and Diana next coordinated a GDOL at the University of Miami Miller School of Medicine. Held at the Don Soffer Clinical Research Center Room: Gordon Center for Simulation and Innovation in Medical Education, University of Miami Miller School of Medicine on Saturday, November 5th. 45 people registered for this in-person event.
One of the most positive aspects of a GDOL is that it provides an intimate gathering where patients and their caregivers are able to ask all of their questions and have them answered by GIST experts, in this case, Dr. Jonathan Trent and his team. LRG GIST Mentor Carolyn Dewalt was onsite to answer questions about the GIST Mentor program and Florida State Leader Jacklyn Vanderpol talked about the Florida support group held monthly. On Friday, November 4, a Second Opinion Clinic was held by Dr. Trent and his staff. Saturday’s agenda began with a GIST Do It Walk in the beautiful Florida sunshine. After opening remarks by Laura Occhiuzzi and Dr. Trent, the day was filled with informative presentations including:
- Overview of GIST and Its Medical Management – Emily Jonczak, MD
- Surgical Management of GIST – Alan Livingstone, MD and Julie Grossman, MD
- Understanding Pathology and the Role of Mutational Testing – Andrew Rosenberg, MD and Liz Montgomery, MD
- What are the Best Ways to Radiographically Measure GIST? – Francesco Alessandrino, MD
- Psychosocial Implications of GIST – Lisa Marie Merheb, MSW, LCSW
- How Can We Accelerate a Cure – Jonathan Trent, MD
- Side Effect Management – Morgan Mount, APRN, Solange Sierra, MSN, APRN, FNP-B, Gina D’Amato, MD
There was also a Q&A with Dr. Trent’s Team. How could you go wrong attending a GDOL with some of the top specialists in the country? Thank you to the staff and presenters of Sylvester Cancer Center for spending the weekend with us. We couldn’t have done this without your help. Thanks go out to our sponsors, who make these events possible: Blueprint Medicines, Cogent Biosciences, Deciphera, Genentech, IDRx, and Novartis.
If you haven’t attended an in-person GDOL, check our Events calendar for upcoming opportunities or contact Diana Nieves: dnieves@liferaftgroup.org
