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, 2020-07-01 16:00, 2020-07-08 16:00, 2020-07-15 16:00, 2020-07-22 16:00, 2020-07-29 16:00, 2020-08-05 16:00, 2020-08-12 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

Virtual Life Fest 2020
2020-07-10 14:00 (America/New_York)
Virtual Life Fest 2020 – July 10th – July 13th
2020 brought a global health crisis that has challenged GIST patients. We had planned this year to be in New Orleans to share valuable information about GIST Research, to enjoy fellowship with each other, and yes, to enjoy the wonderful food and music.
Even though we can’t be together physically for our biennial Life Fest celebration and we won’t be together for GIST Awareness Day, we can unite and spread a message of hope and positive messages while raising GIST awareness across the globe. Thanks to the generosity of our sponsors, we still have a wonderful virtual weekend planned, with some of the same elements Life Fest always provides.
With the latest information being shared in both our traditional GIST 101 presentation with Dr. David Josephy, and through several panels featuring top GIST specialists and researchers, a program targeted to the SDH community as well as fun events including a cooking demonstration, Virtual Life Fest will prove that even with the restrictions on gathering, you cannot keep the GIST community from sharing their strength, hope and experiences.
RegisterOur theme for Virtual Life Fest, and for GIST Awareness Day this year is #GISTHope.
There are many ways for you to share this hopeful message:

Participate in our Virtual Life Fest Events.
Join us in our Virtual Walk. Start a fundraising page to invite family and friends to sponsor you in your efforts to raise funds for GIST Research.
Visit our LRG store to purchase items such as our #GISTHope Masks to wear on your walk.
Make a donation.
Go to our GIST Awareness Day (GAD) page to see how to raise awareness, including our creative #GISTHope rock painting project
Send your stories, photos and messages of hope to Mary Garland, Director of Communications: mgarland@liferaftgroup.org

All times are Eastern Daylight Time

Friday, July 10th

2:00pm GIST 101 Presented by David Josephy (pre-recorded video)

4pmGIST ART Launch

Saturday, July 11th

12:00pm GIST Research Panel: Join GIST experts as they provide updates and answer questions on GIST research and new GIST therapies.

Presenters: Roman Groisberg, MD, Rutgers Cancer Institute of New Jersey; Michael Heinrich, MD, OHSU Knight Cancer Institute; Jason Sicklick, MD, Moores Cancer Center, UC of San Diego

2:00pm GIST Oncologist Panel: Our oncology and surgical GIST experts will share the latest trends, insights and surgical options, and answer questions.

Presenters: Gina D’Amato, MD, Sylvester Comprehensive Cancer Center, U of M; Arun Singh, MD, Ronald Reagan UCLA Medical Center; Jonathan Trent, MD, PhD, Sylvester Comprehensive Cancer Center, U of M; Breelyn Wilky, MD, UCHealth Cancer Center, Anschutz Medical Campus

4:00pm Cooking Demonstration (pre-recorded video) and GIST Cookbook Launch

Sunday, July 12th

12:00pm Virtual Walk Launch (pre-recorded videos)

Monday, July 13th

9:00am - 5:00pmGAD and #GISTHope Messages

12:00pm EDTQ&A with SDH Panel of Experts
Christopher B. Weldon, MD, PhD
Boston Children’s Hospital
Christopher Weldon, MD, PhD is Assistant in Surgery, Department of Surgery; Director, Pediatric Surgery Critical Care Fellowship and Assistant Professor of Surgery, Boston Children’s Hospital, Harvard Medical School. He is Board Certified in Critical Care, General Surgery, and Pediatric Surgery.

Lee Helman, MD
Children’s Hospital Los Angeles
Dr. Helman is a Professor of Pediatrics and Medicine, Keck School of Medicine, USC, Head, Basic and Translational Research, Children’s Center for Cancer and Blood Diseases. His laboratory work focuses on the biology and treatment of rhabdomyosarcoma, Ewing’s sarcoma, osteosarcoma, and pediatric GIST tumors. Major areas of research include the pathophysiologic consequences of IGF signaling, identification of the molecular/biochemical determinants of the biology of sarcomas, and the application of functional genomics to identify new treatment targets.

Jonathan Trent, MD
Sylvester Comprehensive Cancer Center
Dr. Trent’s interests are in the clinical and translational research of sarcomas, direct care of sarcoma patients, and education about sarcoma. The major efforts of Dr. Trent’s research focus on understanding the mechanisms of action and resistance of imatinib in GIST and other sarcomas while striving toward improved therapeutic options.

Andrew Rosenberg, MD
Sylvester Comprehensive Cancer Center
Andrew Eric Rosenberg, MD is the Vice Chair, Director of Bone and Soft Tissue Pathology at the Sylvester Comprehensive Cancer Center in the University of Miami.

Jason Sicklick, MD
Moores Cancer Center
Dr. Jason Sicklick is an NIH-funded investigator and Associate Professor of Surgery at the University of California San Diego Moores Cancer Center. He is a board-certified general surgeon and surgical oncologist specializing in the treatment of hepatobiliary diseases and sarcomas, including gastrointestinal stromal tumors (GIST).

Ruth Casey, PhD
Cambridge University Hospitals, UK
Dr Dr Casey has a specialist clinical interest in hereditary endocrine neoplasia and endocrine cancer. Her research has focused mainly on the role of succinate dehydrogenase gene mutations in tumorigenesis and has a strong translational focus. Her interest in succinate dehydrogenase deficient tumours has led to her collaboration with PAWS GIST.

Eyal Gottlieb, MSc,PhD
Technicon – Israel Institute of Technology
Dr. Gottlieb is a Professor and Director of the Cancer Metabolomics Lab at the Technion-Israel Institute of Technology. He is an internationally renowned expert in the field of metabolomics – measuring components of metabolism in cells under different conditions.

There will also be other special guest speakers.

Download SDH Panel Experts Flyer

Sponsors

Virtual GIST DO IT Walk
2020-07-12
As part of our Virtual Life Fest celebration, we will be hosting a Virtual GIST Do It Walk on Sunday, July 12, 2020. The walk will be held in memory of Ted Wolf, who lost his battle with GIST in 2018.
A virtual walk is a real walk, but on your terms. You get choose your own course, what time you start, and who walks next to you!
registerSponsors

GIST LEARN Online
2020-08-15 13:00 - 15:00 (America/New_York)
GIST Sarcoma Life Raft Group Canada is pleased to invite you to register for our first online event. Our “GIST LEARN Online” webinar will use Zoom video and audio conferencing to provide education and support for people living with GIST.
GIST LEARN Online events are open to GIST patients, caregivers, family members, friends, healthcare providers, and anyone who wishes to learn more about GIST.
Life Raft Group Canada has been hosting in-person GIST patient / caregiver meetings in cities all across Canada for the past twelve years. In 2020, we hope that you will join us online.
Register
Keynote speaker:
David Josephy, PhD
Professor of Molecular and Cellular Biology
President, GIST Sarcoma Life Raft Group Canada
The latest event details can be found at the event registration link above, but please don’t hesitate to contact Life Raft Group Canada by email or phone if there is anything that you would like to discuss.
Sponsors:

Understanding the Link Between Pheo, Para, and GIST
2020-08-26 15:00 (America/New_York)
REGISTERThis hour-long webinar presented by The Pheo Para Alliance will provide an opportunity for the community to ask questions live or submit them beforehand.
This Live Webinar Series, made possible through an educational grant by Progenics, gives patients and their families an opportunity to tune in and interact with experts on a variety of pheo para topics.
The information discussed during this webinar is for informational purposes only, and does not take the place of medical advice from your doctor(s) who know your medical history and current situation.
About the Presenter:
Dr. Jason Sicklick
Associate Professor of Surgery, Division of Surgical Oncology @UC San Diego Health System
Jason Sicklick, MD, is a general surgeon and surgical oncologist who specializes in treating hepatobiliary diseases and sarcomas, including gastrointestinal stromal tumors (GIST). He has a special interest in abdominal and retroperitoneal sarcomas, primary liver tumors and colorectal and neuroendocrine cancers that have metastasized to the liver. Read full bio here.

See other webcasts by Dr. Sicklick here:
Rare GIST Subtypes
Understanding the Concept of “Precision Oncology”
Updates on the Temozolomide Trial
New Insights into Gene Fusion

Moderated by:

Debra Melikian
Patient Advocate
Debra was thrust into the world of GISTS and pheo para when her husband and son were diagnosed. She is a mother on a mission. She and Dr. Sicklick have a unique relationship that powers both of their missions forward to help all patients.

You can read more about Debra:
Patient Advocate’s Story Unfolds in RARE Revolution Magazine

Virtual Caregiver Support Group
2020-09-02 13:00 (America/New_York)
This is an Eight-Week Support Group for GIST Caregivers.
Held every Thursday starting September 2 at 1pm ET.
Limited to 12 participants.
Online Support Group Launching September 10, 2020!
As we continue to navigate this uncertain time together, we want to offer you a little extra support. Starting Wednesday, September 2nd at 1pm ET the LRG will have its own weekly support group for the caregivers facilitated by social worker Angela Edson. In an effort to continue social distancing, we will use an electronic platform, to come together for 8 consecutive weeks as a small group of 10 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 stories, 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 caregivers, 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 Leader:
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 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.

Virtual GISTer Support Group
2020-09-02 17:00 (America/New_York)
As we continue to navigate this uncertain time together, we want to offer you a little extra support. Starting Wednesday, September 2nd, at 5pm ET, the LRG will have its own weekly support group for people living with GIST facilitated by social workers Chelsea Madia and Angela Edson. In an effort to continue social distancing, we will use an electronic platform, to come together for eight (8) consecutive weeks as a small group of 10 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.

REGISTER
About 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 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.

Virtual SDH Support Group
2020-09-02 18:30 (America/New_York)
The Life Raft Group is hoping to start an online group for kids and teens living with GIST, but we can’t do it without you!
Would your child or teen be interested in talking to other adolescents about what it’s like to live with GIST?
The group will be a space to talk about everything from your relationship to your own body, to your relationship with your family and peers, and even your relationship with yourself. It will be a safe place to vent, and explore the many emotions that come up not only around living with your disease, but also around living through this unique and challenging time. You can even vent about your parents if you want.
If they are interested, your child will have the opportunity to connect with others through their brave battles with GIST, and feel seen! And if they are on the fence, remind them that they are not locked into this experience if it doesn’t feel right for them.
Register
