LRG Webcast Series: Updates on the Temozolomide Trial
2019-09-11 14:00 - 15:00 (America/New_York)
The Temozolomide Trial for SDH-deficient GIST Patients
GIST is becoming increasingly diverse. SDH-deficient GIST and paragangliomas often occur in adolescents and young adults. Since these SDH mutations are germline, multiple generations of family members are affected.

Dr. Jason Sicklick of Moores Cancer Center at the University of California San Diego will present a webcast detailing the Phase II study of Temozolomide (TMZ) in advanced SDH-mutant/deficient GIST, a new study available to patients with SDH-deficient GIST.

Listen to the Webinar

About the Presenter:
Jason K. Sicklick, MD, FACS, is an Associate Professor of Surgery, Division of Surgical Oncology; and Co-Director, Biorepository and Tissue Technology Shared Resource, Moores Cancer Center at the University of California, San Diego, UC San Diego Health Sciences.

Technical Tips to Join Meeting:

This is a web-only meeting, accessed only by your internet connection. Participants are encouraged to use the web link automatically provided after registration and to use computer speakers (and/or headsets if available) to hear the audio portion of the meeting. Please log in at least ten minutes prior to the start of the webinar.
Please ensure you have an updated version of Adobe Flash Player (Google Chrome has Flash built-in).
If you are using a mobile device or tablet, in order to view and hear the conference, download the ReadyTalk App from your App store.

Disclaimer:
We cannot provide individual medical advice during this webcast. Information provided in this webcast is not intended as a substitute for your physician’s guidance and care.

GIST Day of Learning - Ottawa
2019-09-28 09:00 - 16:30 (America/New_York) | Ottawa Conference and Event Centre, 200 Coventry Road, Ottawa, Ontario, K1K 4S3, Canada
GDOL Ottawa
Registration is open for the GIST Day of Learning in Ottawa. This is a one-day conference that provides education and support for people living with Gastrointestinal Stromal Tumour (GIST), a soft-tissue sarcoma that can occur anywhere along the GI tract. The speakers at the GIST Day of Learning will cover many aspects of living with and understanding GIST. This conference will also provide a great opportunity to connect with other GIST patients and caregivers as well as the speakers.
The Day of Learning is open to those who have GIST, family members, caregivers, healthcare providers and anyone who wishes to learn more about GIST.
There is no cost for attending the GIST Day of Learning.

Register

Agenda:
(As of 8/29/19, please check at https://liferaftgroup.ca/join-us-at-the-ottawa-gist-day-of-learning/ to register and see updates)

GDOL Location:
Ottawa Conference and Event Centre
200 Coventry Road, Ottawa, ON K1K 4S3
Free Parking
Conference Hotel:
Courtyard by Marriott Ottawa East
200 Coventry Road
Ottawa, ON K1K 4S3
Free Parking

We gratefully acknowledge our GIST Day of Learning sponsors

LRG Webcast Series: Dental Healthcare in GIST
2019-10-07
Dr. Nikhil Guhagarkar will be discussing the dental and oral complications of drugs used in GIST treatment and treatment of these side effects. He will also speak about methods of maintaining good oral hygiene. This video will be prerecorded and released on October 7th and Dr. Guhagarkar will answer questions that you’ve submitted. Please submit questions ahead of time, you may do so here:

Listen to the Webcast
Dr. Guhagarkar is a GISTer and active GIST advocate. He is a City Chapter Leader for Friends of Max India, a Board Member of SPAEN, the author of a Friends Of Max publication titled, “A Guide to Nutrition and Holistic Way of Living with GIST” and participated as an expert in the LRG Webcast Series with “Nutrition and Healthy Living with GIST.”
About the Presenter:
Dr. Nikhil Guhagarkar is an Oral And Maxillofacial Surgeon and Dentist and has over 21 years of experience in his field. Dr. Guhagarkar practices at the Guhagarkar Dental Care Centre in Vileparle, Mumbai, India. He completed his BDS from Government Dental College & Hospital, Mumbai in 1994 and MDS – Oral & Maxillofacial Surgery from Nair Hospital Dental College (NHDC), Mumbai in 1998. He is a member of Indian Dental Association and Indian Association of Oral Surgery.

Technical Tips to Join Meeting:

This is a recorded presentation which will be released on October 7th. Further instructions will be forthcoming. Dr. Guhagarkar will answer your questions. If you wish to submit questions, please do so here: QUESTIONS

Disclaimer:
We cannot provide individual medical advice during this webcast. Information provided in this webcast is not intended as a substitute for your physician’s guidance and care.

GIST CHAT 101: Learn the Basics
2019-10-15 13:00 - 14:00 (America/New_York)
GIST CHAT 101: Learn the Basics

GIST CHAT is our new ListServ replacement launching on October 15th.

During the webinar we will show you how to:

Register
Post
Reply
Search
…and a few other helpful tips and tricks

Watch the Webinar

Night to Fight Cancer 2019
2019-10-24 18:00 (America/New_York) | Midtown Loft & Terrace, 267 5th Avenue, New York, NY, 10016, United States
Join us for Night to Fight Cancer!
LRG Fundraiser
Doors open at 6 pm. Games start at 7 pm.

Register

ALL IN DONATION (POKER & CASINO) – $750
Entry into a charity poker tournament with the opportunity to win prizes
Each guest starts with $5,000 worth of chips for poker
Each guest receives $500 worth of chips for other casino games
Each guest has the opportunity for unlimited Re-Buys during the first hour (Re-Buys cost $500 and get you $2,000 worth of chips)
Open bar and food
POKER DONATION – $600
Entry into a poker tournament with the opportunity to win prizes
Each guest starts with $5,000 worth of chips
Each guest has the opportunity for unlimited Re-Buys during the first hour (Re-Buys cost $500 and get you $2,000 worth of chips)
Open bar and food
CASINO DONATION – $300
Entry into the event to play casino games (Blackjack, roulette, craps)
Each guest starts with $500 worth of chips
Opportunity to purchase additional chips (Additional chips cost $40 for $200 worth of chips and $100 for $500 worth of chips)
Each guest will have the opportunity to upgrade to a poker player for $300 (before games start)
Open bar and food
Club Sponsors
Hearts Sponsors

NJ Support Group Meeting
2019-11-02 10:00 - 12:00 (America/New_York) | The Life Raft Group, 155 US Highway 46, Ste. 202, Wayne Plaza II, Wayne, NJ, 07470, United States
Join us at the LRG Office in Wayne, NJ on Saturday, November 2nd for a GIST Support Group at 10am.
Meet other GISTers and Caregivers.

North Carolina GISTers Lunch
2019-11-12 11:30 - 13:30 (America/New_York) | Firebirds, 6801 Northlake Mall Dr, Charlotte, NJ, 28216, United States
North Carolina GISTers Lunch
Join us at Firebirds in the Northlake Mall, Charlotte, NC,
on Tuesday, November, 12 at 11:30 am.
Please RSVP to Carolyn DeWalt @ ckdew77@aol.com
or call 704-860-8201 for more information.
RSVP

Spokane Area GISTers Luncheon
2020-01-25 12:00 (America/New_York) | Europa Restaurant & Bakery, 125 S. Wall, Spokane, WA, 99201, United States
The Spokane Area Life Raft Group (LRG) luncheon plans are a bit changed, but we are looking forward to seeing as many of you as possible! Instead of meeting at our home, we moved the no host luncheon to Europa Restaurant and Bakery in downtown Spokane. This location is a bit more central and will save a little driving. If you’re wondering about what we plan on doing, it will be very informal. Some have let me know you’re planning to attend, and I really appreciate hearing from you. Others, have not responded.
As for an agenda, I have some literature from LRG to share, but mostly we will be getting to know each other, sharing our stories and talking about resources in the area. I’ve been to these events in other parts of the state and have met great people.
Saturday, January 25, 2020
Time: 12:00 noon
Place: Europa Restaurant
Address: 125 S. Wall, Spokane, WA
Please RSVP so we can better plan with Europa.
If you have questions, call Linda Jackson at 509-220-3989.

Chicago - LRG Support Group Meeting
2020-01-25 13:00 - 15:00 (America/New_York) | Wellness House, 131 North County Line Road, Hinsdale, IL, 60521, United States
Chicago Area GIST Patients will meet at Wellness House in Hinsdale, IL on January 25, 2020.
All Chicago area GIST patients and caregivers are welcome to attend. Meetings are from 1:00 p.m.to 3:00 p.m.. Doors open at 12:30 p.m. and close at 3:30 p.m.. Wellness house is located at 131 N County Line Rd., one block east of Hinsdale Hospital. Parking is free.
Meetings are generally informal. The typical agenda includes patient GIST journey updates and may also include outside subject matter experts as well as informal updates on GIST management and recent GIST publications or meeting presentations.
Attendees are asked to bring a snack or beverage to share before the meeting. If you are planning to attend, please text 847-302-5133 to let us know so we can plan for food and room setup.
There is no charge for the meeting. You do not have to be a member of The Life Raft Group to attend.
Wellness House
131 North County Line Road
Hinsdale, Illinois 60521
Phone 630.323.5150

GISTLEARN Kitchener
2020-01-26 14:00 - 16:00 (America/New_York) | Mill Courtland Community Centre, 216 Mill St., Kitchener, Ontario
“GIST LEARN Kitchener” is an afternoon meeting to provide education and support for people living with GIST. The speakers at GIST LEARN will cover many aspects of living with and understanding GIST. This meeting also offers a great opportunity for you to connect with other GIST patients and caregivers as well as the speakers.
GIST LEARN meetings are open to those who have GIST, family members, caregivers, healthcare providers and anyone who wishes to learn more about GIST.
Rescheduled to Sunday, January 26th!
(Originally scheduled – Sunday, January 12, 2020)
2:00 pm to 4:00 pm
Doors open at 1:30 pm
Mill Courtland Community Centre, 216 Mill St., Kitchener, ON
Hazel McLeod will lead an
informal round-table discussion
David Josephy will give a GIST presentation
that includes a Q&A session
To register or for further information call 855-574-4478 or email info@liferaftgroup.ca

David Josephy is a Professor of Molecular and Cellular Biology at the University of Guelph, where he has taught for more than 35 years. He has been President of GIST Sarcoma Life Raft Group Canada (LRGC) since its inception in 2008. In 2010, David spent a sabbatical term working in the laboratory of Dr. Jonathan Fletcher, a leading GIST researcher at Brigham and Women’s Hospital in Boston. David is a member of the Science Team of The Life Raft Group (USA) and collaborates with GIST patient support groups around the world. His research interests are in the field of Molecular Toxicology. He is particularly interested in the scientific basis for development of new small-molecule drugs for GIST.
Thank you to our sponsors:

GDOL Seattle 2020
2020-02-15 09:00 - 17:00 (America/Los_Angeles) | Orin Smith Auditorium – Building C, University of Washington, 850 Republican Street, Seattle, 98109, United States
Join us at GDOL Seattle, Saturday, February 15, 2020 hosted in partnership with the Seattle Cancer Care Alliance at the Orin Smith Auditorium (Building C) on the University of Washington campus – 850 Republican St., Seattle, Washington. GDOL Seattle is an event for patients & caregivers to learn more about GIST, find support, & enhance knowledge to help navigate their cancer journey. Meet with other patients and caregivers and experts, clinicians, and researchers in the study and treatment of GIST.
RegisterVIEW AGENDAWhat’s a GDOL? A GDOL is a GIST Day of Learning, a free one-day event to help you, as patients and caregivers, learn more about GIST, find support, and enhance your knowledge base to help you navigate your cancer journey. At a GDOL, you will learn more about your disease from expert clinicians, researchers, and advocates and connect with other patients, caregivers, and family members who are also on this rare journey. You are not alone.
The LRG’s mission is simple: cure GIST and help those living with it until then. To do this, we focus on three key areas: research, patient support & education, and advocacy.
See what a GDOL can offer you – visit this link to see presentations, photos, and posts about past GDOLs:

View Past GDOLs

For questions or more information about GDOL, Diana Nieves, Senior Director, Outreach & Engagement, DNieves@liferaftgroup.org

NC Triangle GISTer Support Group Meetings
2020-02-27
The NC Triangle GISTer Group will be meeting in the Raleigh, NC area each month in 2020 on the fourth Thursday of the month.
Contact Carolyn Dewalt at ckdew77@aol.com or 704-860-8201 for more information.

Webinar - New Treatment Options for Rare Diseases in the Soft Tissue - Day 1
2020-03-05 12:00 (America/New_York)
In honor of Rare Disease in the Soft Tissue Day, OncLive is hosting webinars on March 5 and March 6 at 12pm EST about soft tissue sarcoma. GIST is a soft tissue sarcoma.
Dr. Jonathan Trent
Jonathan Trent, MD, PhD, is a Professor of Medicine, Associate Director of Clinical Research, Director of the Sarcoma Program at Sylvester Comprehensive Cancer Center, University of Miami, Miller School of Medicine.
Dr. Trent is a recognized GIST expert.
The webinar will focus on:

Overview of diagnosis and molecular testing
Current treatment algorithms for soft tissue sarcoma
New therapeutic option for PDGFRA+ GIST
Future directions in management

To register for the March 5 webinar:

Register

Webinar - New Treatment Options for Rare Diseases in the Soft Tissue - Day 2
2020-03-06 12:00 (America/New_York)
In honor of Rare Disease in the Soft Tissue Day, OncLive is hosting webinars on March 5 and March 6 at 12pm EST about soft tissue sarcoma. GIST is a soft tissue sarcoma.
Dr. Neeta Somaiah
Dr. Neeta Somaiah will present on March 6. She is an Associate Professor and the Director of Clinical Sarcoma Research, Department of Sarcoma Medical Oncology, UT MD Anderson Cancer Center.
The webinar will focus on:

Overview of diagnosis and molecular testing
Current treatment algorithms for soft tissue sarcoma
New therapeutic option for PDGFRA+ GIST
Future directions in management

To register for the March 6 webinar:

Register

LRG Webcast Series: New Treatment Options for Advanced GIST & Concerns about the Coronavirus
2020-03-23 12:00 - 13:00 (America/New_York)
Avapritinib is a medication used for the treatment of tumors due to one specific rare mutation: It is specifically intended for adults with unresectable or metastatic gastrointestinal stromal tumor that harbor a platelet-derived growth factor receptor alpha exon 18 mutation.
Ripretinib is an investigational broad-spectrum KIT and PDGFRα inhibitor in development for the treatment of patients with advanced gastrointestinal stromal tumors (GIST).
During this webcast presentation, Dr. Michael Heinrich will discuss these two new treatment options for advanced GIST. Dr. Heinrich will explain how each of these drugs works to target mutations for which there has previously been no targeted treatment. He will also address key questions for GIST patients concerning the coronavirus.
Listen to the recapAbout the Presenter:

Michael Heinrich, M.D.
Professor of Medicine and Cell/Developmental Biology
OHSU School of Medicine
Dr. Heinrich earned his medical degree from Johns Hopkins School of Medicine in Baltimore and completed both his residency training and fellowship in hematology/medical oncology at OHSU.
Dr. Heinrich’s research, like much of the work at the Knight Cancer Institute, revolves around a basic, yet complex premise. You have to understand what is broken in order to fix it. That’s why Dr. Heinrich is intently focused on identifying the molecular targets that cause cancer, which is essential to the development of better and less toxic therapies. He is recognized internationally for groundbreaking research discoveries that have improved care for patients with gastrointestinal stromal tumors, and his research has implications for many types of cancer.

Disclaimer:
We cannot provide individual medical advice during this webcast. Information provided in this webcast is not intended as a substitute for your physician’s guidance and care.

Conversations with the Life Raft Group LIVE
2020-04-02 13:00 (America/New_York) | The Life Raft Group, 155 US Highway 46, Ste. 202, Wayne Plaza II, Wayne, NJ, 07470, United States
Save the Date!
Please join us on Thursday, April 2nd at 1 pm for our first online program Conversations with the Life Raft Group.
Designed to be a source for connection and information for the LRG community, these presentations will address topics of concern for patients and caregivers during the COVID-19 crisis.
Our first conversation will be with our Executive Director, Norman Scherzer. As many of you know, in previous careers Norman worked for the Centers for Disease Control (CDC), and served as the Assistant Commissioner of Health for New York City, guiding the public through major health crises such as the AIDS epidemic, Swine flu and many other outbreaks. Norman will discuss strategies for coping with COVID-19.
Viewers will be able to ask questions during the session.
Join the conversation

Virtual GISTer Support Group - FILLED
2020-04-16 11:00 - 12:00 (America/New_York)
This online workshop has been filled. You can use the button below to be put on a waiting list or email Diana Nieves, Senior Director of Outreach & Engagement, at dnieves@liferaftgroup.org, to express your interest in additional sessions.

As we navigate this uncertain time together, we want to offer you a little extra support. Starting Thursday, April 16th at 11am the LRG will have its own weekly support group for people living with GIST facilitated by Chelsea Madia. In an effort to continue social distancing, we will use an electronic platform, to come together for eight consecutive weeks as a small group of 12 participants.
We will talk about all of the feelings you might be experiencing, both in relation to GIST, and also COVID-19. We will share our GISTories, if you are comfortable, and speak freely about the new fears and anxieties we might be feeling as a result of this unprecedented time. The group will be a safe space not only to feel supported by your fellow GIST survivors, but also a place to share our own coping mechanisms to get us through this stressful time. All information shared will be kept confidential.

Waiting List
About the Group Leader:
Chelsea (Ozeri) Madia, LCSW
Chelsea is a licensed clinical social worker in New York, who started in the field in 2011 counseling at-risk teens at the Child Center of New York in Jamaica, Queens. After this, her work took her to the Coalition for the Homeless in lower Manhattan, where she supported mentally ill homeless adults in their quest to move into supportive housing, as well as apply for disability benefits. From there, she worked for nine months on the Psychiatric Mobile Crisis Team at Mount Sinai Beth Israel, before being promoted to Program Manager. In November of 2018, after three years managing the team, Chelsea was diagnosed with metastatic GIST. Since that time, she has been stable on Gleevec, and now is in the early phases of starting her own private counseling practice in New Rochelle, NY.

GIST Meditate - Virtual Event
2020-04-30 12:00 - 13:00 (America/New_York)
GISTMeditate is a part of our virtual GISTEntertainment series
During the current global pandemic, The Life Raft Group wants to reassure you that, as always, we are in this together. We have been working diligently to provide you with the most up to date information regarding COVID-19 and navigating your cancer diagnosis. However, we recognize the stressors that come along with this challenging time.
To help with deal with the stress, we have created a series of virtual fundraising events called GISTEntertainment. Over the next few months we will be hosting several virtual events to keep our community feeling connected. We hope you’ll be able to join us for some relaxation, laughter, and fun!
During this critical time we are asking you to partner with us. Our suggested donation for this event is $10.
Our first GISTEntertainment event will be GIST Meditate on April 30th at noon. Join us for a relaxing meditation while connecting with others in the LRG GIST Community. Meditation can help you lower stress and anxiety, improve focus, reduce brain chatter, connect better and sleep more. During this event, you will learn how to observe your thoughts and feelings without judgement.
registerAbout our presenter:
Sheetal Muhlon
Sheetal Muhlon is a health coach, yoga and meditation teacher, mom of three, former highway engineer and Bar Method Studio owner. She started her “health journey” over a decade ago when she was looking for answers to her exhaustion and migraines. Her doctor told her that her blood test levels were all good and that it was because I had three kids and was getting older but she knew she just wasn’t herself. Her body was not feeling it’s best and she needed to figure this out.

“Growing up my mom would share how we eat certain foods to balance our bodies and maintain a strong immune system. I always had that in my mind and made healthy choices but there were foods I thought were healthy for me but just not working for my body, mind, and spirit. I needed to learn more and enrolled at the Institute for Integrative Nutrition and later become certified in yoga. My journey from trying to feel better, to how foods heal and using movement and breath to support my immune system has led me to feel my best! As a health and wellness coach, I help my clients find personalized simple tools to optimize their health and find balance. Strong immunity, longevity, and vitality have become my focus and inspiring others to feel their best, my purpose.” – Sheetal

Thank you to our GISTMeditate Sponsors!
Rob Taylor
Rob Taylor, Silver Sponsor
“During times of struggle, we have options:
1. Do nothing and hope that things somehow gets better,
2. Continue to use the resource and hope that someone shores it up so that we can continue to benefit.
3. Become the somehow, the someone and take the opportunity and responsibility to give and support the resource that has benefited us much. I choose to be the somehow and the someone, I choose to give.”
Margaret McInteer
Margaret McInteer, Bronze Sponsor
“LifeRaft has been a godsend in my life since receiving my gist diagnosis a year ago. I’ve learned so much about my cancer through the experiences of others. I’ve also talked to 3 or 4 Life Raft staff members who have given me guidance and support. But the best part has been the mentor you assigned to me. Kay has called and encouraged me numerous times and was recently instrumental in getting me a video conference with Dr. Trent in Miami. I’m grateful beyond words!”

Bronze $100 – sponsor names announced at beginning of event, post on social media platforms
Silver $250 – sponsor names announced at beginning of event, post on social media platforms, highlight in newsletter

Gold $500 – sponsor names announced at beginning of event, post on social media platforms, highlight in newsletter, name displayed on website
Platinum $1,000 – sponsor names announced at beginning of event, month sponsorship, post on social media platforms, highlight in newsletter, name displayed on website
Ultra Platinum $2,000 – sponsor names announced at beginning of event, sponsorship for all months, post on social media platforms, highlight in newsletter, name displayed on website
Please contact Jessica Nowak for sponsorship opportunities!
jnowak@liferaftgroup.org

Sarcoma and COVID-19: Your Questions Answered
2020-05-02 12:00 (America/New_York) | Sarcoma Alliance
From our friends at the Sarcoma Alliance:
WEBINAR: Sarcoma and COVID-19: Your questions answered
Saturday, May 2nd for our multidisciplinary webinar with Sarcoma Experts:

Dr. George Demetri
Dr. Gina D’Amato
Dr. Jonathan Trent
Dr. Tom DeLaney
Dr. Fritz Eilber

Meeting begins at 9am Pacific | 10am Mountain | 11am Central | 12noon Eastern
SEE THE WEBINAR

Caregiver Support Group - Virtual
2020-05-05 17:00 - 18:00 (America/New_York) | The Life Raft Group, 155 US Highway 46, Ste. 202, Wayne Plaza II, Wayne, NJ, 07470, United States
This is an Eight-Week Support Group for GIST Caregivers.
Held every Tuesday starting May 5th at 5pm ET.
Limited to 12 participants.
Online Support Group Launching Tuesday, May 5th

As we navigate this uncertain time together, we want to offer you a little extra support. Starting Tuesday, May 5th at 5pm ET the LRG will have its own weekly support group for caregivers of people living with GIST facilitated by Chelsea Madia, LCSW and Angela Edson, LSW. In an effort to continue social distancing, we will use an electronic platform, to come together for eight consecutive weeks as a small group of 12 participants.
We will talk about all of the feelings you might be experiencing, both in relation to caring for someone living with GIST, and also navigating your role during COVID-19. We will share experiences, if you are comfortable, and speak freely about the new fears and anxieties we might be feeling as a result of this unprecedented time. The group will be a safe space not only to feel supported by your fellow GIST caretakers, but also a place to share our own coping mechanisms to get us through this stressful time. All information shared will be kept confidential.

REGISTER

About the Group Leaders:
Angela Edson, LSW
Angela is a licensed social worker in New Jersey. She has been an employee at the Life Raft Group for close to five years. During her graduate studies she interned at a local hospital’s outpatient cancer center providing support to patients and caregivers. Additionally, Angela has personal experience as a caregiver to loved ones with a cancer diagnosis. She understands the challenges that come along with this role and is excited to co-facilitate this support group.<
Chelsea Madia, LCSW
Chelsea Madia is a licensed clinical social worker in New York, who started in the field in 2011 counseling at-risk teens at the Child Center of New York in Jamaica, Queens. After this, her work took her to the Coalition for the Homeless in lower Manhattan, where she supported mentally ill homeless adults in their quest to move into supportive housing, as well as apply for disability benefits. From there, she worked for nine months on the Psychiatric Mobile Crisis Team at Mount Sinai Beth Israel, before being promoted to Program Manager. In November of 2018, after three years managing the team, Chelsea was diagnosed with metastatic GIST. Since that time, she has been stable on Gleevec, and now is in the early phases of starting her own private counseling practice in New Rochelle, NY.

LRG Webcast Series: GIST, TKI Treatment & Effects on Memory
2020-05-14 14:00 - 15:00 (America/New_York)
Cancer-related cognitive impairment, or CRCI, is common among certain cancer survivors, for example, individuals with breast cancer. CRCI usually presents as mild to moderate problems with memory and attention and can even persist long after cancer treatment has ended. Many have called this “chemobrain” or “chemofog” but research over the past three decades indicates that cancer itself, genetic vulnerabilities and treatments other than chemotherapy can lead to persistent CRCI.
Similar to patients treated with chemotherapy, patients with GIST are complaining about long-term side effects of Gleevec therapy with respect to cognitive function (“Gleevec brain”). Nevertheless, very little is known about CRCI in cancer patients who are being treated with tyrosine kinase inhibitors (TKIs), like Gleevec, including patients with GIST.
This discussion will review CRCI in general, and how a person who is being treated for GIST could be affected. We will also talk about strategies that can help ameliorate CRCI and discuss our new research on CRCI and GIST. Finally, in light of the COVID-19 pandemic, we will give advice on how cancer survivors can best cope with and care for themselves during this unusual global health event.
SEE The RecapAbout the Presenters:
Anette Duensing, M.D.
Associate Professor of Pathology
University of Pittsburgh School of Medicine
Anette Duensing holds an M.D. degree from the University of Hannover School of Medicine, Germany, and is an Associate Professor of Pathology at the University of Pittsburgh School of Medicine as well as Member of the Cancer Therapeutics Program at the UPMC Hillman Cancer Center. Her research focuses on gastrointestinal stromal tumors (GISTs) as well as other sarcomas with the goal of identifying novel therapeutic approaches. Recently, Dr. Duensing has teamed up with Dr. Robert Ferguson at UPMC HCC to study cognitive impairment in GIST patients treated with Gleevec and other tyrosine kinase inhibitors. Dr. Duensing is the author of nearly 70 original articles, reviews and book chapters. Her research has been supported by the American Cancer Society, the Sarcoma Foundation of America, the GIST Cancer Research Fund and the Life Raft Group.
Robert J. Ferguson, Ph.D.
Assistant Professor of Medicine with the Division of Hematology/Oncology
University of Pittsburgh School of Medicine and Hillman Cancer Center
Dr. Ferguson is a clinical psychologist and Assistant Professor of Medicine with the Division of Hematology/Oncology at the University of Pittsburgh School of Medicine and Hillman Cancer Center. His clinical and research interests are the treatment of cognitive effects of cancer, cancer survivorship and palliative care. He is the author of numerous peer reviewed research articles and book chapters on treatment of cancer-related cognitive dysfunction and other topics related to the field of behavioral medicine. His research has been funded by grants from the National Cancer Institute, NIH Office of Research on Women’s Health, and the Lance Armstrong Foundation.

Disclaimer:
We cannot provide individual medical advice during this webcast. Information provided in this webcast is not intended as a substitute for your physician’s guidance and care.

GISTBe - Virtual Event
2020-05-15 18:00 (America/New_York)
GISTMindfulness is a part of our virtual GISTEntertainment series
During the current global pandemic, The Life Raft Group wants to reassure you that, as always, we are in this together. We have been working diligently to provide you with the most up to date information regarding COVID-19 and navigating your cancer diagnosis. However, we recognize the stressors that come along with this challenging time.
To help with deal with the stress, we have created a series of virtual fundraising events called GISTEntertainment. Over the next few months we will be hosting several virtual events to keep our community feeling connected. We hope you’ll be able to join us for some relaxation, laughter, and fun!
During this critical time we are asking you to partner with us. Our suggested donation for this event is $10.
Our second GISTEntertainment event will be GISTBe on May 15th at 6PM EST. Join us for a Mindfulness session while connecting with others in LRG’s GIST Community during this virtual event.

Mindfulness means maintaining a present-moment awareness of our thoughts, feelings, bodily sensations, or surrounding environment. It helps cancer patients better manage symptoms of fatigue, anxiety, and fear of recurrence, and their caregivers to practice self-compassion.

During this critical time we are asking you to partner with us. Our suggested donation for this event is $10.
registerAbout our presenter:
This session will be run by Carolina Ponce, a Mindfulness coach, Learning Specialist at a private school, mother of one boy, and a GIST Patient (diagnosed in 2006).
Thank you to our GISTEntertainment Series Sponsors!
Rob Taylor
Rob Taylor, Silver Sponsor
“During times of struggle, we have options:
1. Do nothing and hope that things somehow gets better,
2. Continue to use the resource and hope that someone shores it up so that we can continue to benefit.
3. Become the somehow, the someone and take the opportunity and responsibility to give and support the resource that has benefited us much. I choose to be the somehow and the someone, I choose to give.”
Margaret McInteer
Margaret McInteer, Bronze Sponsor
“LifeRaft has been a godsend in my life since receiving my gist diagnosis a year ago. I’ve learned so much about my cancer through the experiences of others. I’ve also talked to 3 or 4 Life Raft staff members who have given me guidance and support. But the best part has been the mentor you assigned to me. Kay has called and encouraged me numerous times and was recently instrumental in getting me a video conference with Dr. Trent in Miami. I’m grateful beyond words!”

Bronze $100 – sponsor names announced at beginning of event, post on social media platforms
Silver $250 – sponsor names announced at beginning of event, post on social media platforms, highlight in newsletter

Gold $500 – sponsor names announced at beginning of event, post on social media platforms, highlight in newsletter, name displayed on website
Platinum $1,000 – sponsor names announced at beginning of event, month sponsorship, post on social media platforms, highlight in newsletter, name displayed on website
Ultra Platinum $2,000 – sponsor names announced at beginning of event, sponsorship for all months, post on social media platforms, highlight in newsletter, name displayed on website
Please contact Jessica Nowak for sponsorship opportunities!
jnowak@liferaftgroup.org

Conversations with the LRG: Staying Alive in Difficult Times
2020-05-21 13:00 - 14:00 (America/New_York) | The Life Raft Group, 155 US Highway 46, Ste. 202, Wayne Plaza II, Wayne, NJ, 07470, United States
REcording available on FacebookJoin us on May 21, 2020 at 1PM ET for the next in our “Conversations with the LRG” series. In this presentation, Executive Director, Norman Scherzer will be joined by staff member and Data Analyst, Jerry Call and by Professor David Josephy to discuss relevant scientific topics including the impact of COVID-19 on GIST patients, and thoughts on promising research for GIST. There will be a 15-minute Q & A at the end of the presentation.
You may submit questions in advance to Mary Garland, Communications Director: mgarland@liferaftgroup.org
You will also be able to submit questions during the presentation that will be answered at the end.
About the Panelists:

As founder and Executive Director of the LRG, Norman leverages his extensive experience in the communicable disease sector which included 25 years at the Center for Disease Control and from his position as Assistant Commissioner of Health for New York City, to help cancer patients both survive and thrive.
See Norman Scherzer’s presentation Personal Cancer Survival Plan and the accompaniment Personal Cancer Survival Plan (PDF)

LRG Staff member, Jerry Call, is an expert in the science and treatment of GIST. Jerry has been part of the Life Raft Group since its beginnings, and is currently serving as a Data Analyst, helping to identify vital information to help patients survive and thrive.
Read Jerry Call’s latest study, featured in LRG Science, Survival in advanced GIST has improved over time and correlates with increased access to post-imatinib tyrosine kinase inhibitors: results from Life Raft Group Registry

Dr. David Josephy is a Professor of Biochemistry at the University of Guelph in Canada and serves as President of Life Raft Group Canada. He has given presentations globally on understanding the basics of GIST in his GIST 101 lecture.
See Dr. Josephy’s presentation The Biology of GIST – What Every Patient Needs to Know.

GISTTrivia - Virtual Event - New Date
2020-05-27 17:00 - 18:00 (America/New_York) | The Life Raft Group, 155 US Highway 46, Ste. 202, Wayne Plaza II, Wayne, NJ, 07470, United States
GISTTrivia is a part of our virtual GISTEntertainment series
During the current global pandemic, The Life Raft Group wants to reassure you that, as always, we are in this together. We have been working diligently to provide you with the most up to date information regarding COVID-19 and navigating your cancer diagnosis. However, we recognize the stressors that come along with this challenging time.
To help with deal with the stress, we have created a series of virtual fundraising events called GISTEntertainment. Over the next few months we will be hosting several virtual events to keep our community feeling connected. We hope you’ll be able to join us for some relaxation, laughter, and fun!
At the Life Raft Group, we work hard to make sure our members are knowledgable about their GIST diagnosis and treatment plan. We believe knowledge is power! What better way to test your knowledge than with Trivia Night? Join us on May 27nd at 6PM EST for some trivia questions regarding GIST, the LRG, and some fun!
During this critical time we are asking you to partner with us. Our suggested donation for this event is $10.
register

Webinar - Advances in the Treatment of GIST
2020-05-29 13:30 - 14:30 (America/New_York)
This is a free CancerCare Connect® Education Workshop for people living with GIST, their families, partners, caregivers, friends and health care professionals. Listen to this workshop over the telephone or connect to our webcast online.
Workshop Topics
• Overview of the Treatment of Gastrointestinal Stromal Tumors (GIST), in the Context of COVID-19
• Diagnosis and Staging
• Treatment Options
• Clinical Trials and Novel Approaches to Treating GIST
• Strategies to Manage Common Treatment Side Effects, Discomfort and Pain
• The Importance of Communicating with Your Health Care Team
• What’s New on the Horizon for GIST Cancers
• Questions for Our Panel of Experts
REGISTERwebinar flyerSpeakers
Suzanne George, MD
Clinical Director
Center for Sarcoma and Bone Oncology
Senior Physician
Dana-Farber Cancer Institute Associate Professor of Medicine Harvard Medical School
Michael C. Heinrich, MD
Professor of Medicine
Cell and Developmental Biology Hematology and Medical Oncology Program in Molecular and Cellular Biosciences
School of Medicine
Oregon Health & Science University (OHSU)
Carolyn Messner, DSW, OSW-C, FAPOS, FAOSW
Director of Education and Training CancerCare®

¿Eres paciente con GIST de habla hispana? (Reunión Virtual)
2020-06-11 19:00 (America/Mexico_City)
Por favor únase a nosotros para esta Reunión Virtual.
Alojado por Fundacíon GIST México
Aprendiendo más sobre GIST y las nuevas terapias aprobadas. Jueves 11 de junio a las 1900 hrs tiempo Ciudad de México. (8pm New York)
Presentado por Dr. David Heredia, Oncólogo médico Instituto Nacional de Cancerología.
Únete a la reunión:
Unirse a reunión de Microsoft Teams
Más información sobre Teams | Opciones de reunión

LRG Webcast Series: GIST: How to Understand your Pathology Report
2020-06-16 12:00 - 13:00 (America/New_York)
In this webinar, we will be discussing how to interpret your pathology report. We will cover interpretation of all parts of a pathology report, beginning with understanding the final diagnosis and diagnostic comment. We will then review the results and significance of performed ancillary testing, including immunohistochemistry, prognostic biomarker testing, and molecular testing. We will end by discussing how the aforementioned pathology report data affects clinical surgical and therapeutic decision-making.
REGISTERAbout the Presenters:
Kelsey McHugh, M.D.
Gastrointestinal, Hepatic, and Pancreatobiliary Pathology Fellow
Robert J. Tomsich Pathology & Laboratory Medicine Institute
Cleveland Clinic
Kelsey McHugh, MD is a board certified anatomic and clinical pathologist, with cytopathology subspecialty certification, who is currently completing gastrointestinal, hepatic, and pancreatobiliary pathology subspecialty training. She anticipates graduating from the Cleveland Clinic Gastrointestinal, Hepatic, and Pancreatobiliary Pathology Fellowship in June 2020, after which she will remain at the Cleveland Clinic as a staff pathologist beginning July 2020.

Virtual GISTer Support Group
2020-06-17 17:00 - 18:00 (America/New_York)
Online Support Group Launching June 17th
Space is limited to 12 participants
As we continue to navigate this uncertain time together, we want to offer you a little extra support. Starting Wednesday, June 17th at 5pm EDT the LRG will have its own weekly support group for people living with GIST facilitated by Chelsea (Ozeri) Madia, LCSW and Angela Edson, LSW. In an effort to continue social distancing, we will use an electronic platform, to come together for eight consecutive weeks as a small group.
We will talk about all of the feelings you might be experiencing, both in relation to GIST, and also COVID-19. We will share our GISTories, if you are comfortable, and speak freely about the new fears and anxieties we might be feeling as a result of this unprecedented time. The group will be a safe space not only to feel supported by your fellow GIST survivors, but also a place to share our own coping mechanisms to get us through this stressful time. All information shared will be kept confidential.
REGISTERAbout the Group Leaders:
Chelsea Madia, LCSW
Chelsea is a licensed clinical social worker in New York, who started in the field in 2011 counseling at-risk teens at the Child Center of New York in Jamaica, Queens. After this, her work took her to the Coalition for the Homeless in lower Manhattan, where she supported mentally ill homeless adults in their quest to move into supportive housing, as well as apply for disability benefits. From there, she worked for nine months on the Psychiatric Mobile Crisis Team at Mount Sinai Beth Israel, before being promoted to Program Manager. In November of 2018, after three years managing the team, Chelsea was diagnosed with metastatic GIST. Since that time, she has been stable on Gleevec, and now is in the early phases of starting her own private counseling practice in New Rochelle, NY.
Angela Edson, LSW
Angela is a licensed social worker in New Jersey. She has been an employee at the Life Raft Group for close to five years. During her graduate studies she interned at a local hospital’s outpatient cancer center providing support to patients and caregivers. Additionally, Angela has personal experience as a caregiver to loved ones with a cancer diagnosis. She understands the challenges that come along with this role and is excited to co-facilitate this support group.
Space is limited to 12 participants.

GISTBe: A Mindfulness Series - Virtual
2020-06-24 16:00 (America/New_York)
Join us for a relaxing Mindfulness series while connecting with others in LRG’s GIST community during this virtual event. Mindfulness means maintaining a present-moment awareness of our thoughts, feelings, bodily sensations, or surrounding environment. It helps cancer patients better manage symptoms of fatigue, anxiety and fear of recurrence and their caregivers to practice self-compassion. The group will meet every week for 8 consecutive weeks starting Wednesday, June 24th at 4pm EDT. During this 8 week module series, we will cover the following:
Module 1 – Introduction to Mindfulness
Module 2- Breathwork Basics
Module 3- Breathwork for Pain Management and Side Effects
Module 4- Self Compassion and Compassion for Caregivers
Module 5- Breathwork for Insomnia/ Stress and Anxiety
Module 6- Mindful Eating
Module 7- Mindfulness as a Way of Life
Module 8- Tips and Q&A
REGISTERAbout the Group Leader
Carolina Ponce is a Mindfulness Coach, Learning Specialist at a private school, mother of one boy, and a GIST patient (diagnosed in 2006). Carolina started practicing Mindfulness when she was diagnosed with chronic anxiety after my diagnosis. As an educator, Carolina realized that she had to share this amazing practice with her students, friends and family. She decided to get certified as a coach and started training families , teachers, admin, etc. Today, Carolina teaches it to anyone who wants to learn more about “the art of being present”, staying calm through hard times, and preventing health issues. Through this journey, she has realized that everyone can learn to practice Mindfulness and it can easily become a way of life.

GISTRead/GISTWatch - Virtual Event
2020-06-25 12:00 (America/New_York) | The Life Raft Group, 155 US Highway 46, Ste. 202, Wayne Plaza II, Wayne, NJ, 07470, United States
GISTWatch is a part of our virtual GISTEntertainment series
(Updated 6-10-20) Our GISTEntertainment series continues with GIST Read and GIST Watch. We have combined these event to encourage more people to have time to read our selection, The Hours by Michael Cunningham and to watch the film. Nicole Kidman won an Academy Award for her portrayal of Virginia Woolf. During our event, we will have an open discussion comparing the novel versus the film.
Some of you may wonder why we chose such a serious book in a time in which such difficult things are happening in our world. We did ask our members to vote on the title, and this was the book chosen.
The Hours is actually a perfect book for these times, for although it deals with some difficult issues (Mental Illness, serious illness, restrictions on roles for women), above all, it is a book about the elevation of ordinary things and the value of love in the midst of the difficult. In the midst of a pandemic and a world crying out for justice and equality, it is those ordinary precious hours that define us.
During this critical time we are asking you to partner with us. Our suggested donation for this event is $10.
REGISTER for GIST Read/GIST Watch
