The Life Raft Group held a GIST Day of Learning (GDOL) in Portland, at Oregon Health & Science University (OHSU), on June 22nd, 2019. GDOLs are free, one-day programs that provide both education and support to the GIST community. Top GIST specialists present the latest on research and treatment options as well as provide a comprehensive review of the science behind GIST. GDOLs provide an opportunity not only to meet and interact with local expert practitioners in an intimate setting but also for patients to connect with one another in a supportive environment.
What happened at GDOL Portland?
Over 50 patients, caregivers, OHSU practitioners, and friends attended this weekend event. Several new members joined our GIST community while in Portland. Our day began with a one-mile GIST DO IT Walk across the Tilikum Crossing Bridge over the Willamette River followed by a meet and greet breakfast during the registration and check-in. Diana Nieves, LRG Senior Director of Outreach & Engagement, welcomed everyone and presented Dr. Michael Heinrich of Oregon Health & Science University (OHSU) with the Circle of Excellence Award for being a Co-Founder of the GIST Global Expert Surveillance Team.
Dr. Heinrich graciously accepted this award and opened our GDOL by introducing Dr. Suzanne George of Dana-Farber Cancer Institute who gave a presentation on Standard GIST Treatments. Dr. Arun Singh of Ronald Reagan UCLA Medical Center followed with his presentation on New GIST Treatments/New Agents for GIST. OHSU’s Registered Nurse, Tracy Havnaer, spoke about How to Find and Participate in a GIST Clinical Trail. Dr. Heinrich then shared an update on SDH-deficient GIST which was followed by Clinical Pharmacist Joseph Bubalo’s presentation on THC, CBD and their impact on GIST.
Thank you to Bayer, Deciphera, Genentech, Novartis, and Pfizer for sponsoring our 2019 Portland GDOL.
Why attend a GDOL?
GDOL rocked!! It seemed like some of the most awesome people converged and met in Portland. My cheeks are sore from smiling, my heart is full, my knowledge has been expanded, I have met people that I had an extraordinary connection with, and I was amazed. There is something about GISTers that would make one believe that we live in a world all our own. Everyone was kind and very easy to get along with. A group of us walked and talked like we were old friends. We met a group of young people that were amazed that we had just met. I was empowered by the knowledge shared by the presenters, I was floored by the kindness of the GISTers, The Life Raft Group staff and humbled by the time that Dr. Heinrich and his wife spent with us. It was truly a blessing and I highly anticipating attending the next one. If am able in body, I will be there. – Rob Taylor
Indeed, the GDOL was fantastic. As someone who attended my first one, I can’t rave enough about the experience. I feel I met some incredible people that were either GISTers or supporters. I know I will see many of them again. An almost instant bond and not just because of the disease. The speakers were terrific, and Life Raft put together a wonderful day. Can’t wait until the next one. – John Abrams
The GDOL was a huge success in many ways. The presenters were top notch! And for some, it was their first opportunity to meet and share with other GISTers…priceless! And others just got to catch up with old friends. So glad that I was able to attend, and I hope that everyone will have such an opportunity at some point in the future. – Carolyn Dewalt
The GIST DO IT walk was great, the GDOL presentations were so informative, and then so many fascinating conversations with other GISTers and their supporters – and conversations on topics other than GIST. Many thanks to Diana and the rest of The Life Raft Group and OHSU staff who made this possible. – Jack Tinnea