The Life Raft Group

GISTBe: A Mindfulness Series - Virtual
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.

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

Conversations with the LRG: GIST Mentors, Part 2
2020-09-10 14:00 (America/New_York)
Join us on Thursday, September 10th at 1pm ET for our next “Conversations with the LRG”. In this presentation, GIST Mentors Carolyn Dewalt, Julie Durkee, and Kay Stolzer will discuss the role of the GIST Mentor and how one can assist you on your GIST journey.
You will learn why each of these patients/caregivers chose to volunteer as a GIST Mentor and more about them and their own journey with GIST.
There will be a 15-minute Q & A at the end of the presentation.
You may submit questions in advance to Diana Nieves, Senior Director, Outreach & Engagement: dnieves@liferaftgroup.org.
You will also be able to submit questions during the presentation that will be answered at the end.
REGISTER

Women in Sarcoma: Cancer Warriors
2020-09-24 14:00 (America/New_York)
An Interactive Multidisciplinary Panel of Experts
September 24th, 2020 at 2pm
The Life Raft Group has developed the Women in Sarcoma program in recognition of the many women sarcoma specialists that engage with our organization and our patient and caregiver community to educate and advocate on behalf of those living with sarcoma. Our goal is to highlight women in the sarcoma medical profession that make a difference in patients’ lives, and to inspire the community to hear stories and perspectives of women’s role in oncology.
The September webcast will feature an interactive panel of women sarcoma experts sharing their expertise as powerful advocates working on behalf of those living with sarcoma. Please join us for this interactive session with women leading the field of sarcoma!
If you have questions about this panel or about registration, please contact Sara Rothschild, VP Program Services

REGISTEROur Panel of Experts
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GIST DO IT Walk - Verona, NJ
2020-09-26 08:00 (America/New_York) | Verona Park, Bloomfield Ave & Lakeside Avenue, Verona, NJ, 07044, United States
Sign up today for the 2nd Annual Verona, NJ GIST DO IT Walk!
Join GISTers, family & friends, and the LRG Staff for this beautiful walk around Verona Park as we walk in memory of GISTer Ted Wolf and to raise funds for #GISTresearch! Register today. $35 registration fee includes a free GIST DO IT t-shirt. Meet at the park at 8am. You can purchase LRG face masks and additional t-shirts at our store.
See photos from last year’s NJ GIST DO IT Walk.
If you can’t be present for the walk, you can donate to #GISTresearch with the link below also.
RegisterInterested in Sponsorship Opportunities?
Contact Jess Nowak, jnowak@liferaftgroup.org
Event Sponsor – $25,000
Company logo displayed on event signage, on the LRG website, & in the LRG newsletter
Company logo displayed on Step & Repeat
Thank you from LRG Senior Vice President at event
Ability to place item/flyer (provided by sponsor) in Swag Bag
Table at event
5 registrations, 5 t-shirts, and 5 masks
Platinum Sponsor – $20,000
Company logo displayed on event signage, on the LRG website, & in the LRG newsletter
Thank you from LRG Senior Vice President at event
Ability to place item/flyer (provided by sponsor) in Swag Bag
Table at event
4 registrations, 4 t-shirts, and 4 masks
Gold Sponsor – $15,000
Company logo displayed on event signage, on the LRG website, & in the LRG newsletter
Thank you from LRG Senior Vice President at event
Ability to place item/flyer (provided by sponsor) in Swag Bag
Table at event
3 registrations, 3 t-shirts, and 3 masks
Silver Sponsor – $10,000
Company name displayed on event signage, on the LRG website, & in theLRG newsletter
Thank you from LRG Senior Vice President at event
Ability to place item/flyer (provided by sponsor) in Swag Bag
Table at event
2 registrations, 2 t-shirts, and 2 masks
Bronze Sponsor – $5,000
Company name displayed on event signage, on the LRG website, & in the LRG newsletter
Thank you from LRG Senior Vice President at event
1 registrations, 1 t-shirts, and 1 masks

GDOL Tampa 2020 - Virtual
2020-10-10 09:00 - 11:00 (America/New_York)
Join the LRG for GDOL Tampa, Saturday, March 28, 2020 at 9am. GDOL Tampa 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.
Register 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

GDOL Denver 2020 - Virtual
2020-10-10 15:00 - 17:00 (America/New_York)
Join the LRG for Virtual GDOL Denver, October 10 at 1pm ET. GDOL Denver 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.
Register AgendaVirtual GDOL Denver Sponsors:

What’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

LRG Webcast: Genetics 101
2020-10-20 12:00 (America/New_York)
With the alphabet soup of terms and genes that cancer patients tend to hear during diagnosis, it takes some time to really understand what these terms mean.
In her Genetics 101 webcast, Dr. Raygada will unravel the DNA terms and seek to empower patients by helping them understand the genetic basis of their conditions so that they may decrease the risks associated with the mutations and tumors they carry.
REGISTERAbout the presenter
Margarita Raygada, PhD, Oncology Genetic Counselor
Dr. Raygada’s doctorate degree is in Medical Science from the Uniformed Services University of the Health Sciences/Naval Hospital, Bethesda, Maryland. Her Master’s degree is in Human Genetics and Genetic Counseling, Georgetown University Hospital (GUH) in Washington, D.C., with two post-doctoral fellowships: Molecular Biology at The Johns Hopkins Hospital in Baltimore, and Cancer Genetics at GUH. Research Focus: Cancer genetics is my passion. I am interested in delineating the genetic changes in rare tumors and identifying associated phenotypes that may lead to common pathways and therefore improved outcomes for cancer patients. But most importantly I hope to empower patients by helping them understand the genetic basis of their conditions, and by educating them on how they can use this information to manage their cancer so that they may decrease the risks associated with the mutations and tumors they carry.

Women in Sarcoma: Case Presentations
2020-10-26 12:00 (America/New_York)
Case Presentations
October 26, 12PM ET
Please join us for the second webcast of our Women in Sarcoma series. The Life Raft Group has developed the Women in Sarcoma program in recognition of the many women sarcoma specialists that engage with the sarcoma patient community and focus on educating and advocating on behalf of those living with sarcoma.
This panel features three women sarcoma experts presenting unique case studies that they have encountered in their practices. Panelists will interact with each other about these case studies, and participants will gain meaningful insight into how these experts diagnose and treat sarcoma patients, and how they collaborate with colleagues toward the goal of achieving positive outcomes for these challenging cases.

If you have questions about this panel or about registration, please contact Sara Rothschild, VP Program Services

Please join us for this interactive session with women leading the field of sarcoma!

REGISTEROur Panel of Experts

Vaia Florou, MD
Oncologist
University of Utah
Huntsman Cancer Center

Ciara Kelly, MBBCh BAO
Oncologist
Memorial Sloan Kettering
Cancer Center

Sandra R. Brackert, NP
Nurse Practitioner
Ronald Reagan UCLA
Medical Center

Virtual Caregiver Support Group
2020-11-04 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.
As we continue to navigate this uncertain time together, we want to offer you a little extra support. Starting Wednesday, November 4th at 1pm ET the LRG will have its own weekly support group for the caregivers facilitated by Marlene Nei, GIST Caregiver. 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.
About the Group Leader:
Marlene Nei, GIST Caregiver
As an active member of the Life Raft Group, Marlene advocates for the needs of the caregiver community because she feels they are an underrepresented group. It is her mission to advocate for the entire GIST community making sure they are equipped with the appropriate resources on their GIST journey.
Register

Virtual GISTer Support Group
2020-11-11 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, November 4th, at 5pm ET, the LRG will have its own weekly support group for people living with GIST facilitated by social worker Chelsea Madia. 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.

Virtual Caregiver Support Group
2021-01-20 13:00, 2021-01-27 13:00, 2021-02-03 13:00, 2021-02-10 13:00 (America/New_York)
Weekly Support Group for GIST Caregivers.
Held every Wednesday at 1pm ET beginning January 20, 2021
As we continue to navigate this uncertain time together, we want to offer you a little extra support. Every Wednesday at 1pm ET the LRG has a weekly support group for the caregivers facilitated by Marlene Nei, GIST Caregiver. To continue social distancing and connecting with caregivers across the United States, we will use an electronic platform, to come together every week as a group. We will talk about all the feelings you might be experiencing, both in relation to GIST, and COVID-19.
We will share our stories, if you are comfortable, and speak freely about the new fears and anxieties we might be feeling because 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. Contact Diana Nieves at dnieves@liferaftgroup.org for more information.
Please email Diana Nieves at dnieves@liferaftgroup.org to join this meeting.
About the Group Leader:
Marlene Nei, GIST Caregiver
As an active member of the Life Raft Group, Marlene advocates for the needs of the caregiver community because she feels they are an underrepresented group. It is her mission to advocate for the entire GIST community making sure they are equipped with the appropriate resources on their GIST journey.

Virtual GISTer Support Group
2021-02-02 18:00 - 19:30 (America/New_York)
The group will meet via Zoom on the first Tuesday of each month from 6:00 PM – 7:30 PM EST (NYC Time).
The group open to those who have not been able to participate in the past, for one reason or another. We will start each group with a “Round Robin” in which anyone who feels like updating the group on how they are doing/feeling can do so. There is no pressure to speak if you prefer to simply listen. Once we complete our updates, the group will have the opportunity for organic conversation to develop in relation to our emotional experiences around GIST, and other challenges that we may be experiencing as a community.
In order to be able to moderate a flowing discussion, the group will be capped at 15 people each month. The first 15 people into the Zoom waiting room will participate. Keep in mind that since the group is now open, you don’t necessarily have to attend each month to be to participate.
Contact Diana Nieves to join: dnieves@liferaftgroup.org

Australian GISTers Virtual Meet & Greet
2021-02-05 11:00 (Australia/Melbourne)
Please be aware of the time difference: This webinar takes place on Feb 4th at 7pm ET for the US and Feb 5th at 11 am Melbourne time.)
Please join us for a Virtual Meet & Greet with our new Australian GIST Representatives Shari Reid and Amy Kenworthy! GIST patients and family members are welcome to join this virtual get together to connect as well as meet one of the leading GIST experts in Australia – Dr. John Zalcberg from Monash University.
REGISTERPresenters
Shari Reid, Victoria
Shari Reid, formerly a Systems Administrator in Health & Safety, is currently a proud, full-time mum to son Robbie. Though she’s living in regional Victoria with her husband, Glenn, and son, Shari was born in the U.S. and her family moved to Australia when she was a baby.

Amy Kenworthy, Gold Coast
Professor Amy Kenworthy, also born in the U.S., was raised in Massachusetts and immigrated to Queensland, Australia, after finishing her PhD in 1999. She and her husband, George, are both professors at Bond University on the Gold Coast. They have two teens, Bryce, 13, and Mariel, 17.

Read more about these amazing GISTers!

Dr. John Zalcberg
Professor Zalcberg is currently the Head of the Cancer Research Program as well as NHMRC (MRFF) Practitioner Fellow in the School of Public Health and Preventive Medicine at Monash University – currently overseeing the establishment and activities of clinical quality registries across various tumour types. He is also the inaugural Tony Charlton Chair of Oncology at Alfred Health as well.
You can view this presentation on OncLive – Dr. Zalcberg on the Management of Patients With GIST

California GISTer Virtual Support Group
2021-02-06 16:00 (America/New_York)
This Support Group will be held at 1pm Pacific Time/4pm ET.
Join us on Saturday, February 6, at 1:00 p.m. PST/4:00pm EST. Make yourself comfortable at your computer, laptop, tablet, etc. and participate in what will be a very helpful and informative meeting.
The Life Raft Group is offering a virtual California Support Group with Southern California Leader Dina Wiley. The group will meet to talk to each other, discuss individual GIST issues, and get answers to questions. This will enable you to not only get some relief from the worry of GIST, but to also help others, as well. We are, after all, in the same life raft, and we are each needed to pull together. When we do, wonderful things happen!
And here’s the best part — we will have a very special participant — Dr. Michael Heinrich, Professor of Medicine at the Knight Cancer Institute of the Oregon Health & Science University. Dr Heinrich was a key player in the original Gleevec research. And, as new mutations of GIST are found he has continued his research resulting in new and better drugs that attack GIST where Gleevec cannot. Dr. Heinrich will be available to answer any questions you may have, and explain some of the mysteries of GIST.
REGISTERAbout the Group Leader:
Dina Wiley – Dina is a long-time Southern California LRG Support Group Leader. Read about Dina’s GIST journey here
About the Special Guest:
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.
Listen to Dr. Heinrich’s most recent webinar for the LRG.

Disclaimer: Information provided in this webcast is not intended as a substitute for your physician’s guidance and care.
