Friday July 15
|3:00-5:00 PM||Life Fest Registration|
|3:00 PM||GIST 101: Understanding the Basics and Biology behind GIST||David Josephy||David will try to give patients a basic understanding about the biology of GIST. Starting with a brief history of GIST, the presentation will also touch on how GIST differs from common cancers and the important role of the pathologist. Armed with this knowledge, it will be easier for patients to grasp the sometimes difficult concepts that they face during their cancer journey.|
|5:00 PM||Cocktail Reception|
|6:00-9:00 PM||Dinner and Awards Ceremony|
Saturday July 16
|8:00 AM||Breakfast- Roundtables with topics of interest|
|8:45 AM||Welcome Remarks and Introduction||Norman Scherzer|
|9:00 AM||Current Clinical Management of GIST||Dr. Arun Singh||Dr. Singh will discuss the current standard of care for GIST patients.|
|9:30 AM||Latest Advances in GIST Treatment and Research||Dr. Bartosz Chmielowski||Dr. Chmielowski will discuss the importance of monitoring the disease over time. He will give an overview of the latest research findings in GIST Research. He will also focus on innovative clinical management involving novel research to treat the disease.|
|10:15 AM||Not all Surgeries are the Same: Case Study Reviews and Panel Discussion||Dr. Ronald DeMatteo|
Dr. Michael LaQuaglia
Dr. Jason Sicklick
|A panel of expert GIST surgeons will discuss distinctive and somewhat controversial surgical cases.|
|11:00 AM||The Future of Cancer Care|
|Mutational Testing-Why you Need it Now||Dr. Arun Singh||Dr. Singh will discuss mutational testing, which is crucial to properly treat a disease as molecularly diverse as GIST.|
|Cutting Edge Treatment-Can Immunotherapy Work for GIST?||Dr. DeMatteo||Immunotherapy has been explored in a multitude of cancers and is just now being examined in GIST. Dr. DeMatteo will update us on his research in this area.|
|Understanding your Cancer’s Metabolism||Dr. Van Tine||Dr. Van Tine will address how to understand your tumor’s unique biology for amino acids and sugars and how those will be built into future therapies.|
|1:15 PM||P.L.A.Y. (Positivity Laughter Awareness You)||Jennifer Sherwood||In this session, participants learn some practical exercises that will help them to be in the moment, feel happy, laugh and just have fun.|
|Time||Wild Type GIST -Session||Speaker||Description|
|8:00 AM||Breakfast- Roundtables with topics of interest|
|9:00 AM||Overview of Wild Type and Pediatric GIST||Dr. Lee Helman||Wild Type GISTs, which lack KIT and PDGFRA gene mutations, are the primary form of GIST in children and occasionally occur in adults. They respond poorly to standard targeted therapy. The NIH has characterized more than 100 patients with Wild Type GIST and these finding will be discussed by Dr. Helman.|
|9:15 AM||The Role of Surgery in the Treatment of Wild Type GIST||Dr. Michael LaQuaglia||Dr. LaQuaglia will share the importance of surgical management for Wild Type GIST and the value in going to a skilled surgeon.|
|9:30 AM||Demystifying Rare Subtypes-Quadruple Wild Type GIST||Dr. Jason Sicklick||Dr. Sicklick will share his research on novel targets for Wild Type GIST.|
|9:45 AM||Is Wild Type GIST all about glutamine or is it also about glucose?||Dr. Brian Van Tine||Dr. Van Tine will provide a discussion on the development of current metabolic therapies for Wild Type GIST patients.|
|10:15 AM - 10:45 AM||Important Updates- A Panel on Wild Type GIST||Dr. Lee Helman-Overview of NIH Clinic||Wild Type GIST tumors comprise a rare subset of all GISTs (less than 15%) and disproportionately affect younger patients. In order to better understand these very rare tumors, the NIH Pediatric and Wild Type GIST clinic was established in 2008. This clinic has been a collaboration among multiple centers across the US and has led to a better understanding of these GISTs and how to manage patients with this rare subset. This talk will provide an overview of how this clinic operates.
Other panelists will discuss multiple initiatives that impact the Wild Type GIST Community.
|10:45 AM||Sara Rothschild-Virtual GIST Tumor Board||Sara will discuss initiatives of the Virtual GIST Tumor Board which brings together leading experts to discuss complicated cases.|
|10:50 AM||Erin MacBean-GISTKids||GISTKids: who we are, what we've done, and where we aim to be.|
|10:55 AM||Phyllis Gay-GSI Wild Type GIST Online Support Group||Phyllis will discuss navigating the GSI online community.|
|11:00 AM||Wild Type GIST Q&A Expert Panel||Dr. Helman|
|A Discussion of topics relevant to the Wild Type GIST Community.|
|11:45 AM||Wild Type GIST Panel:|
How the Community Can Make a Difference
|Moderator: Erin MacBean||Community discussions on what advocacy can do, what patients need, and brainstorming ideas for outreach.|
|Time||Workshop 1||Workshop 2||Workshop 3|
Riding the Cancer Wave: A Spiritual and Emotional Journey
Michael Eselun, BCC
What can happen to long held beliefs when met with a cancer diagnosis and finding meaning in the most unlikeliest of places.
Why is Proper Nutrition so Important?
Jeanne Peters, RD
A discussion about the relevance of proper nutrition for GIST management.
Generics vs. Brand:
What you Need to Know to Make an Informed Decision
Generic Imatinib was released in the United States in February 2016. This workshop will educate participants about generic drugs and the questions that need to be addresed to your treating physician.
The Role of Integrative Medicine in Cancer Treatment-Oncology in Mind and Body Healing
Dr. David Wong
Dr. Wong will discuss how integrative medicine utilizes all appropriate, evidence-based therapies to achieve health.
Managing your Side Effects
Sandra Brackert, NP
An interactive discussion regarding understanding and managing side effects of targeted therapies and living and/or caring for someone with GIST.
GIST: Management Beyond Imatinib
This workshop is a special discussion for patients living with advanced disease.
Knowledge is Power and Life
Phyllis will share the value in arming yourself with the proper tools to acquire information that helps you become an informed patient.
|2:30 PM - 4:00 PM||Title
Show Us Your Rare: An Exercise on Therapeutic Expression
GIST Kids will take some time to really get to know each other. We will play games, be silly, let go, take in a guided meditation and maybe walk away with some new friends.
|4:15 PM||The Healthy Mind Platter||Dr. Katherine Puckett||There are seven daily essential mental activities necessary for optimum mental health. These seven daily activities make up the full set of “mental nutrients” that your brain and relationships need to function at their best and bring balance into your daily life.|
|5:00 PM||Celebration of Life Ceremony in the Zen Garden|
Sunday July 17
|8:00 AM||Breakfast - Roundtables with topics of interest|
|9:00 AM||Story of Hope - A Patient's Story||Dr. Monica Anderson||Dr. "Moe" Anderson will inspire us through sharing her own personal journey of health challenges to surviving, thriving and loving life.|
|9:10 AM||Healing Calm: The Practice of Stillness||Dr. Katherine Puckett||It is the still moments in our lives where we connect deep within ourselves and healing unfolds. This interactive session will challenge participants to discover daily practices that provide the "moments of calm" that sustain healing.|
|9:30 AM||Advancing Health Data to Find a Cure||Michelle Durborow||This session will highlight the role of the Patient Registry and the value in contributing your health data for the greater good and how it helps impact patient survival. Updates on current research projects will also be provided.|
|10:45 AM||Personal GIST Survival Plan: 10 Steps to Surviving GIST||Norman Scherzer||Norman will share his unique perspective, which empowers participants to effectively navigate the health system and become their own advocate.|
|11:30 AM||Coming Attractions: |
• What the LRG is Working On
• Getting Involved: Volunteering and Becoming Active in the GIST Community
|Norman Scherzer &|
|This session will provide an update on current LRG activities and potential future projects.|
|12:30 PM||Adjourn: Safe Journey Home|