Friday July 15

TimeMain SessionSpeakerDescription
3:00-5:00 PMLife Fest Registration
3:00 PMGIST 101: Understanding the Basics and Biology behind GISTDavid JosephyDavid 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 PMCocktail Reception
6:00-9:00 PMDinner and Awards Ceremony

Saturday July 16

TimeMain SessionSpeakerDescription
7:00 AMYoga
8:00 AMBreakfast- Roundtables with topics of interest
8:45 AMWelcome Remarks and IntroductionNorman Scherzer
9:00 AMCurrent Clinical Management of GISTDr. Arun SinghDr. Singh will discuss the current standard of care for GIST patients.
9:30 AMLatest Advances in GIST Treatment and ResearchDr. Bartosz ChmielowskiDr. 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.
10:00 AMBreak
10:15 AMNot all Surgeries are the Same: Case Study Reviews and Panel DiscussionDr. Ronald DeMatteo
Dr. Michael LaQuaglia
Dr. Jason Sicklick
A panel of expert GIST surgeons will discuss distinctive and somewhat controversial surgical cases.
11:00 AMThe Future of Cancer Care

Mutational Testing-Why you Need it NowDr. Arun SinghDr. 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 MetabolismDr. Van TineDr. 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.
12:15 PMLunch
1:15 PMP.L.A.Y. (Positivity Laughter Awareness You)Jennifer SherwoodIn this session, participants learn some practical exercises that will help them to be in the moment, feel happy, laugh and just have fun.

TimeWild Type GIST -SessionSpeakerDescription
7:00 AMYoga
8:00 AMBreakfast- Roundtables with topics of interest
9:00 AMOverview of Wild Type and Pediatric GISTDr. Lee HelmanWild 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 AMThe Role of Surgery in the Treatment of Wild Type GISTDr. Michael LaQuagliaDr. LaQuaglia will share the importance of surgical management for Wild Type GIST and the value in going to a skilled surgeon.
9:30 AMDemystifying Rare Subtypes-Quadruple Wild Type GISTDr. Jason SicklickDr. Sicklick will share his research on novel targets for Wild Type GIST.
9:45 AMIs Wild Type GIST all about glutamine or is it also about glucose?Dr. Brian Van TineDr. Van Tine will provide a discussion on the development of current metabolic therapies for Wild Type GIST patients.
10:00 AMBreak
10:15 AM - 10:45 AMImportant Updates- A Panel on Wild Type GISTDr. Lee Helman-Overview of NIH ClinicWild 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 BoardSara will discuss initiatives of the Virtual GIST Tumor Board which brings together leading experts to discuss complicated cases.
10:50 AMErin MacBean-GISTKidsGISTKids: who we are, what we've done, and where we aim to be.
10:55 AMPhyllis Gay-GSI Wild Type GIST Online Support GroupPhyllis will discuss navigating the GSI online community.
11:00 AMWild Type GIST Q&A Expert PanelDr. Helman
Dr. LaQuaglia
Dr. Sicklick
A Discussion of topics relevant to the Wild Type GIST Community.
11:45 AMWild Type GIST Panel:
How the Community Can Make a Difference
Moderator: Erin MacBeanCommunity discussions on what advocacy can do, what patients need, and brainstorming ideas for outreach.
12:15 PMLunch

TimeWorkshop 1Workshop 2Workshop 3
2:00 PMTitle
Riding the Cancer Wave: A Spiritual and Emotional Journey

Speaker
Michael Eselun, BCC

Description
What can happen to long held beliefs when met with a cancer diagnosis and finding meaning in the most unlikeliest of places.
Title
Why is Proper Nutrition so Important?

Speaker
Jeanne Peters, RD

Description
A discussion about the relevance of proper nutrition for GIST management.
Title
Generics vs. Brand:
What you Need to Know to Make an Informed Decision

Speaker
Michelle Durborow

Description
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.
3:00 PMTitle
The Role of Integrative Medicine in Cancer Treatment-Oncology in Mind and Body Healing

Speaker
Dr. David Wong

Description
Dr. Wong will discuss how integrative medicine utilizes all appropriate, evidence-based therapies to achieve health.
Title
Managing your Side Effects

Speaker
Sandra Brackert, NP

Description
An interactive discussion regarding understanding and managing side effects of targeted therapies and living and/or caring for someone with GIST.
Title
GIST: Management Beyond Imatinib

Speaker
Michelle Durborow
David Josephy

Description
This workshop is a special discussion for patients living with advanced disease.
4:00 PMBreak

TimeWorkshop 4
2:00 PMTitle
Knowledge is Power and Life

Speaker
Phyllis Gay

Description
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 PMTitle
Show Us Your Rare: An Exercise on Therapeutic Expression

Speaker
Jennifer Sherwood

Description
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.
4:00 PMBreak

TimeMain SessionSpeakerDescription
4:15 PMThe Healthy Mind PlatterDr. Katherine PuckettThere 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 PMCelebration of Life Ceremony in the Zen Garden

Sunday July 17

TimeMain SessionSpeakerDescription
7:00 AMMeditation
8:00 AMBreakfast - Roundtables with topics of interest
9:00 AMStory of Hope - A Patient's StoryDr. Monica AndersonDr. "Moe" Anderson will inspire us through sharing her own personal journey of health challenges to surviving, thriving and loving life.
9:10 AMHealing Calm: The Practice of StillnessDr. Katherine PuckettIt 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 AMAdvancing Health Data to Find a CureMichelle DurborowThis 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.
10:30 AMBreak
10:45 AMPersonal GIST Survival Plan: 10 Steps to Surviving GISTNorman ScherzerNorman will share his unique perspective, which empowers participants to effectively navigate the health system and become their own advocate.
11:30 AMComing Attractions:
• What the LRG is Working On
• Getting Involved: Volunteering and Becoming Active in the GIST Community
Norman Scherzer &
LRG Staff
This session will provide an update on current LRG activities and potential future projects.
12:00 PMQ&A
12:30 PMAdjourn: Safe Journey Home