The Life Raft Group

Florida Support Group
2022-09-12 18:00 (America/New_York)
Zoom, 2nd Monday of the Month – 6pm ET
Our moderator is a fellow GISTER/LRG Member, Jackie, from Orlando, Florida. She was diagnosed with GIST in late 2016. She is hopeful that this group will be helpful to GIST patients and their caregivers, who are also welcome to attend. This group will meet online every 2nd Monday of the month at 6pm ET.
If you wish to attend, please email Jackie at dillonjackie62@gmail.com for the Zoom link for the meeting.

Let's Get to the GIST of It!
2022-09-07 18:00 (America/New_York)
The Life Raft Group is excited host another “Let’s Get the GIST of It” session. During this recurring online event, patients and caregivers participate and share overall experiences (good or bad) of their current treatment. The topic of this installment is “The new and upcoming treatments in GIST.” We will be discussing two new clinical trials – Cogent (CGT9486) and Theseus (THE-630), as well as recently approved drugs like AYVAKIT (avapritinib) and QINLOCK (ripretinib).
The goal of this initiative is to discuss key topics that will provide patients and caregivers with insight about their current treatment, learn more information about new clinical trials or learn more about a new drug by listening to other people’s experiences. During this event, we will discuss topics like side effects, dosages, scans, and support. You will also have the opportunity to interact and connect with patients like you who are taking the same drug or experiencing the same side effects. Big or small, all input is important and we are excited for you to be part of this initiative.
If you or a loved one is currently enrolled in a Cogent (CGT9486) and Theseus (THE-630) trial or currently taking ripretinib or avapritinib and would like to learn more about these drugs or share your experiences with other GISTers, please join this event. For more information or questions, please contact Sahibjeet Kaur at skaur@liferaftgroup.org
REGISTER

Virtual Caregiver Support Group
2022-09-07 13:00 - 14:00, 2022-08-17 13:00 - 14:00, 2022-08-03 13:00 - 14:00, 2022-07-20 13:00 - 14:00, 2022-07-06 13:00 - 14:00, 2022-06-15 13:00 - 14:00, 2022-06-01 13:00 - 14:00, 2022-05-18 13:00 - 14:00 (America/New_York) and 5 more dates
A Bi-Weekly Virtual Support Group for GIST Caregivers
Held on the first & third Wednesdays of the month
As we continue to navigate this uncertain time together, we want to offer you a little extra support. LRG has a twice monthly 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 gather 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.

The Importance of Biomarker Testing
2022-08-12 12:00 - 13:00 (America/New_York)
August 12th, 12-1pm ET
The Life Raft Group is partnering with Dr. Michael Wagner from the University of Washington to present “The Importance of Biomarker Testing” to GIST patients and caregivers on August 12th, 2022 from 12pm-1pm EST. During this virtual presentation, Dr. Wagner will describe what biomarker testing is and how GIST patients can advocate for this test to ensure the best treatment for their specific cancer.
REGISTERAbout our Presenter:
Dr. Michael Wagner
University of Washington
Michael Wagner, MD is an Assistant Professor of Medicine at the University of Washington and an Assistant Professor in the Clinical Research Division at the Fred Hutchinson Cancer Research Center (FHCRC). He is the Director of Sarcoma Clinical Research. After graduating from Harvard University with a medical degree, Dr. Wagner completed his residency at Mt. Sinai Hospital in New York and medical oncology fellowship at the University of Texas MD Anderson Cancer Center. Dr. Wagner has received numerous awards, including the Conquer Cancer Foundation of ASCO Young Investigator Award and QuadW Foundation-AACR Fellowship for Clinical/Translational Research for his research on sarcoma. Dr. Wagner has been in his current position in Seattle since 2017.
Thank you to our 2022 LRG webinar sponsors:

Life Fest New Orleans
2022-07-29 - 2022-07-31
Life Fest New Orleans
July 29th-31st, 2022
If you have any questions regarding Life Fest, please email Jessica Nowak at jnowak@liferaftgroup.org
REGISTERLife Fest is a unique event where hundreds of patients and caregivers come together for a weekend to interact with each other and the medical and scientific communities that serve them. Faced with a rare form of cancer, GIST patients have a great need for information about this disease, particularly as the science evolves and our understanding reveals a complex set of subtypes of GIST, each responding differently to available treatments. Each year brings a wealth of new information, and patients are eager to learn about the latest treatments.
Life Fest workshops provide patients with emerging medical information, and they come away with a deeper knowledge of the disease, treatments, and side-effect management. They find hope in knowing the scientific community is working toward a cure, and hope is such a vital asset as they struggle day by day for survival.
The Life Raft Group emerged in recognition of the tremendous need for support in the GIST community. Life Fest 2022 will provide patients and caregivers with that support. Coming together with fellow patients from all walks of life from around the world is a meaningful and powerful experience.
In addition to our traditional educational workshops, Life Fest 2022 will feature scientific presentations highlighting the newest research and the latest treatments. Additionally, other disease advocacy groups will be invited to present the work of their organizations, and share lessons learned.
Reasons to attend Life Fest
Program Highlights
Where to Eat in NOLA
Sights & Sounds of NOLA
Click to view online and print agenda

Thank you to our Life Fest Sponsors!

GIST Awareness Day Webinar: SDH Updates and Stories
2022-07-13 12:00 - 13:00 (America/New_York)
GIST Awareness Day (GAD), July 13th), is a time where GIST experts, patients, caregivers can come together to educate the public about this disease and advocate towards finding a cure. The Life Raft Group invites GIST patients and caregivers to celebrate GAD with us on July 13th at 12pm. During this virtual event, Dr. John Glod, Clinical Director of the Pediatric Oncology Branch in the Center for Cancer Research at National Cancer Institute, will discuss updates from the NIH Pediatric & Wildtype GIST Clinic, which is a part of My Pediatric and Adult Rare Tumor Network (MyPART). Immediately following Dr. Glod’s presentation, pediatric GIST patient Lleyton Schelesky will share his GIST story. After the presentations, there will be time for a Q&A.
If you have questions about SDH-deficient GIST and would like to submit them prior to the webinar, please send them to Sara Rothschild at srothschild@liferaftgroup.org.
REGISTERAbout the Presenters
John Glod, MD, PhD
Associate Research Physician, National Cancer Institute, Pediatric Oncology Branch
Dr. Glod obtained his M.D. and Ph.D. from the University of Colorado in Denver and trained in pediatrics and pediatric oncology at Cincinnati Children’s Hospital, Johns Hopkins Hospital, and the Pediatric Oncology Branch of the NCI. Following an fellowship in neuro-oncology at the NCI, Dr. Glod served as faculty in the departments of pediatrics and pharmacology at Rutgers Cancer Institute of New Jersey. Dr. Glod joined the Pharmacology and Experimental Therapeutics Section in 2013. His research interests focus on understanding the biology of rare pediatric solid tumors and exploring new therapies for patients with these diseases.

Lleyton Schelesky
Patient Advocate
Lleyton was diagnosed with GIST at age 12. Now a young adult, Lleyton will share his experience with SDH-deficient GIST.

Managing Medical Bills
2022-06-29 12:00 - 13:00 (America/New_York)
June 29th, 12-1pm ET
The Life Raft Group is partnering with Triage Cancer to present Managing Medical Bills to GIST patients and caregivers on June 29th, 2022 from 12pm-1pm EST. During this virtual presentation, Melissa Salamon of Triage Cancer will provide valuable information on how to mitigate the financial impact of a cancer diagnosis across the continuum of care.
REGISTERAbout our Presenter:
Melissa Salamon
Triage Cancer
Melissa is a Staff Attorney at Triage Cancer, where she provides education on the legal and financial issues that may occur after a cancer diagnosis. Prior to joining Triage Cancer, Melissa ran the Health Law Partnerships at the Legal Aid Society of Southwest Ohio. Before law school, Melissa served as an Urban Youth Development volunteer with the U.S. Peace Corps in Paraguay where she became fluent in Spanish. She also worked as a Case Manager in the foster care system in Hillsborough County, Florida.
Melissa attended the Ohio State University where she graduated with a J.D./M.A. dual degree from the Moritz College of Law and John Glenn School of Public Affairs. She graduated cum laude with a B.A. in Sociology and Anthropology from Tulane University. She is a member of the Ohio bar.
Thank you to our 2022 LRG webinar sponsors:

GDOL Toronto 2022 - Hybrid
2022-06-18 11:00 - 16:00 (America/Toronto) | Toronto Don Valley Hotel, 175 Wynford Dr., Toronto, Ontario, Canada
GIST SARCOMA LIFE RAFT GROUP CANADA
Saturday June 18, 2022
Attend in-person at
Toronto Don Valley Hotel, 175 Wynford Dr, Toronto, Ontario
or attend virtually via Zoom
In-person check-in begins at 11:00 AM – Conference begins 12:00 PM – Conference ends at 4:00 PM
GIST Sarcoma Life Raft Group Canada is pleased to announce that registration is now open for the GIST Day of Learning on Saturday, June 18, 2022.
This will be our first conference which offers a choice to attend in-person or to attend virtually via Zoom videoconferencing. Our plan is to offer the entire in-person conference via Zoom and allow both in-person and virtual attendees to participate in the roundtable discussions as well as the Q&A during the presentations.
This GIST Day of Learning conference will begin at 12:00 PM so as to provide reasonable start and end times for all Canadian time zones.
For those unfamiliar with our GIST Day of Learning conferences, Life Raft Group Canada has been hosting these GIST patient and caregiver conferences across Canada since 2012, to provide support and education for those living with GIST. This conference is open to those who have GIST, caregivers, family members, friends, healthcare providers, and anyone who wishes to learn more about GIST. This will be our 11th GIST Day of Learning.
There is no charge for attending the GIST Day of Learning.
This conference will include:

Informative sessions
Roundtable discussions in which all attendees can participate
Lots of opportunity to meet informally with other attendees as well as the speakers
Buffet lunch and refreshments

REGISTERWhen you register, you will be asked to indicate if you are planning to attend in-person or to attend virtually via Zoom.

Updates from ASCO 2022
2022-06-15 19:00 - 20:00 (America/New_York)
Webinar, June 15, 7-8 pm ET
ASCO (American Society of Clinical Oncology) is an important conference in the oncology community where new scientific research updates are shared. The Life Raft Group is excited to present Dr. Andrew Wagner and Dr. Herbert Loong, who will summarize abstracts and presentations that were presented during this conference that are relevant to the GIST patient community.
REGISTERAbout our Presenter:
Andrew J. Wagner, MD
Dana-Farber Cancer Institute
Dr. Andrew J. Wagner is the Deputy Chief Medical Officer at Dana-Farber Cancer Institute and the Medical Director of Adult Ambulatory Oncology. As a medical oncologist and translational researcher in the Center for Sarcoma and Bone Oncology and Associate Professor of Medicine at Harvard Medical School, Dr. Wagner focuses on the treatment of patients with GIST and sarcoma, and conducts laboratory research and clinical studies to identify new targets and treatments for these diseases. He received a PhD in Biochemistry and Molecular and an MD from the University of Chicago Pritzker School of Medicine. Dr. Wagner completed his Internship and Residency in Internal Medicine at Brigham and Women’s Hospital in Boston, where he later served as Chief Medical Resident. He completed a fellowship in Hematology and Medical Oncology at Dana-Farber Cancer Institute, Brigham and Women’s Hospital, and Massachusetts General Hospital, and then joined the Oncology Staff at Dana-Farber where he is currently a Senior Physician in the Department of Medical Oncology.

Herbert H. Loong, MBBS, PDipMDPath, MRCP(UK), FRCP Edin, FHKCP, FHKAM(Medicine)
The Chinese University of Hong Kong
Dr. Herbert H. Loong holds conjoint appointments of Clinical Associate Professor in the Department of Clinical Oncology and Deputy Medical Director of the Phase 1 Clinical Trials Centre of The Chinese University of Hong Kong. He is also the current and founding convenor of the Prince of Wales Hospital Adult Sarcoma Multidisciplinary Team.
Dr. Loong obtained his medical degree with a Distinction in Surgery from The University of Hong Kong in 2003. He has completed a Fellowship in Drug Development at Princess Margaret Cancer Centre in Toronto, Canada with a special focus on Experimental Therapeutics. His clinical and research interests also include Sarcoma Medical Oncology, Thoracic Oncology and Health Economics.
Dr. Loong is a recipient of the European Cancer Congress Fellowship Grant (2013), the American Society of Clinical Oncology (ASCO) Annual Meeting Merit Award (2014), the Hong Kong College of Physicians Young Investigators’ Award (2014). Nominated by patients and their caregivers, Dr. Loong led the Lung Cancer Team at CUHK to be bestowed the IASLC Foundation Cancer Care Team Award in recognition for providing the best thoracic oncology care in “Asia & Rest of the World” in 2018.
Dr. Loong has served or continues to serve in various capacities in various professional international oncology bodies, including the International Affairs Committee and the Asia-Pacific Regional Council of ASCO, the Membership, Education and Communications Committees of the IASLC. He has been elected as a Board Member of the Connective Tissue Oncology Society (CTOS) for 2022-2024. He is also a founding executive committee member of the newly formed Asia Pacific Oncology Drug Development Network (APODDC). He is also a Board Member in the specialty of Medical Oncology in the Hong Kong College of Physicians. In his appointment as a Registration Committee member of Pharmacy and Poisons Board of Hong Kong, he helps oversee the registration of medicinal products and clinical trials in the territory.
Thank you to our 2022 LRG webinar sponsors:

Efectos de la Nutrición y la Microbiota Intestinal en pacientes con GIST
2022-06-07 19:00 (America/Mexico_City)
La versión en español titulada, “Efectos de la Nutrición y la Microbiota Intestinal en pacientes con GIST”
Martes 07 junio a las 19:00 Cdmx/20:00 Chile /19:00 Colombia /21:00 Ara.
Organizado por Fundación GIST México y AlianzaGIST.
La Sra. Berenice Carbajal-López es una estudiante de doctorado que tiene un Máster en Ciencias de la Salud con una tesis relacionada con el uso de tecnologías en la atención nutricional y psicológica de los pacientes con GIST. Durante esta presentación virtual, la Sra. Carbajal-López describió los beneficios de una nutrición adecuada, la relación entre la nutrición y los procedimientos quirúrgicos, el vínculo entre el microbioma y el cáncer, y el ejercicio.
¿tienes preguntas?
Envíe un correo electrónico a Piga Fernández en pfernandez@liferaftgroup.org
REGISTERAcerca del presentador:
Berenice Carbajal-López
Fundación GIST México
La Sra. Berenice Carbajal-López es estudiante de doctorado y tiene una maestría en Ciencias de la Salud con una tesis relacionada con el uso de tecnologías en la atención nutricional y psicológica de pacientes con GIST. Es diplomada en Investigación Clínica y Bioestadística por el Instituto Nacional de Cancerología de México. Cuenta con experiencia en el cuidado de la salud de pacientes con GIST, como Coordinadora de Atención al Paciente de 2014 a 2019 y como Directora Global desde 2020 en la Fundación GIST México. La Sra. Carbajal-López también ha colaborado en la redacción y revisión de artículos de investigación y capítulos de libros en el área de Oncología, con ocho publicaciones a la fecha como autora principal y coautora en revistas indexadas y ha participado en congresos nacionales e internacionales como SMEO 2018, ASCO 2019 y ESMO-GI 2017, 2018, 2019, 2020, 2021 y 2022.

Effects of Nutrition and the Gut Microbiome in GIST Patients
2022-05-04 12:00 - 13:00 (America/New_York)
May 4th, 12-1pm ET
The Life Raft Group is partnering with Fundación GIST México to present “Effects of Nutrition and Gut Microbiome in GIST Patients” to GIST patients and caretakers on May 4th at 12pm ET. Ms. Berenice Carbajal-López is a doctoral student who holds a Master in Health Sciences with a thesis related to the use of technologies in the nutritional and psychological care of patients with GIST. During this virtual presentation, Ms. Carbajal-López will describe the benefits of proper nutrition, the relationship between nutrition and surgical procedures, the link between the microbiome and cancer, and exercise.
REGISTERAbout our Presenter:
Ms. Berenice Carbajal-López is a doctoral student who holds a master’s degree in Health Sciences with a thesis related to the use of technologies in the nutritional and psychological care of patients with GIST. She has a diploma in Clinical Research and Biostatistics at the National Cancer Institute in Mexico. She has experience in health care of GIST patients, as Patient Care Coordinator from 2014 to 2019 and as Global Director since 2020 at Fundación GIST México. Ms. Carbajal-López has also collaborated in drafting and review of research articles and book chapters in the area of Oncology, with eight publications to date as main author and co-author in indexed journals and has participated in national and international congresses such as SMEO 2018, ASCO 2019, and ESMO-GI 2017, 2018, 2019, 2020, 2021, and 2022.
Thank you to our 2022 LRG webinar sponsors:

GDOL Washington, DC - Virtual
2022-04-27 14:00 - 16:00 (America/New_York)
GDOL DC is April 27th – 2pm-4pm ET
A GIST Day of Learning (GDOL) is a free one day event to help patients and caregivers learn more about this rare cancer, find support, and enhance their knowledge base to help them navigate their cancer journey.
The Life Raft Group has a simple focus: to cure a form of cancer — GIST — and to help those living with it until then. To do this, the Life Raft Group focuses on three key areas: research, patient support & education, and advocacy, which lay the foundation of our mission to ensure the survival of GIST patients through a comprehensive approach connecting individual patients’ needs, the worldwide community of GIST advocates and the global health and research environment.
If you have any questions, please contact Diana Nieves at dnieves@liferaftgroup.org
REGISTER

Rare Cancers: Great Unmet Medical Needs
2022-04-26 08:00 - 17:00 (America/New_York) | Columbia University Herbert Irving Comprehensive Cancer Center, 1130 St. Nicholas Avenue, New York, NY, 10031, United States
This Symposium is Virtual and In-Person at Columbia University Irving Medical Center
The Columbia University Herbert Irving Comprehensive Cancer Center and the Jed Ian Taxel Foundation for Rare Cancer Research invite you to join them for “Rare Cancers: Great Unmet Medical Needs”, Tuesday, April 26, 2022. This CME conference is open to both the patient advocacy community and medical professionals. Leading experts in rare cancer medicine, research, public policy, and advocacy will share their insights at this hybrid event (on location and virtual). Patients & caregivers/patient advocates attend for free. Read more…

PROGRAM DESCRIPTION AND OBJECTIVES
At least 1 in 8 cancers diagnosed in adults are considered rare cancers. By definition rare cancers are ones with a prevalence of < 200,000 cases per year in the United States. This means that well over 200,000 patients are diagnosed with rare cancers each year in this country. If one excludes the most common types of cancers such as breast, lung, colon and prostate cancer the remaining cancers are particularly rare and this number is much higher. In fact, rare cancers could represent up to a third of all cancers diagnosed each year. Therefore, “rare cancers” represent a major health care problem in the United States and around the world. Despite the relative frequency of these cancers they are poorly understood, infrequently studied, and do not receive the type of funding seen in the more common tumor types. The symposium is designed to focus on specific types of rare cancers with the goal of developing new treatment paradigms based on an improved understanding of the molecular biology of this heterogeneous group of disease.
At the conclusion of this activity, participants will be better able to:

Define rare cancers and its heterogeneity
Discuss the current approaches used to treat this range of diseases
Identify the tumor biology of rare cancers and how this could impact future therapeutic directions in cancer therapy
Propose future directions in cancer medicine for these rare cancers
Delineate a blueprint for investing resources in the treatment and cure of rare cancer

One CME credit is available for medical professionals, and the deadline for Abstracts is April 1st. All information is available in the brochure from the link below.
REGISTER

MEETING LOCATION
Columbia University Irving Medical Center
1130 St. Nicholas Avenue, First Floor, New York, NY 10032
Parking is available at the Columbia University Irving Medical Center parking lot, located on the southwest corner of Fort Washington Avenue and West 165th Street.

Event Brochure/Agenda PDF

GIST DO IT Walk - Verona, NJ
2022-04-09 08:00 (America/New_York) | Verona Park, Verona, NJ, Verona, NJ
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.
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

Be an Informed Patient, Part 2: GIST
2022-04-06 12:00 - 13:00 (America/New_York)
Be an Informed Patient, Part 2: Navigating GIST NCCN Guidelines
In Part Two of our “Be an Informed Patient” series, The Life Raft Group invites all GIST patients and caregivers to register for our NCCN Webinar taking place on April 6th at 12:00 pm ET. The National Comprehensive Cancer Network (NCCN) creates guidelines for different diseases to guide physicians in their clinical practice. Dr. Margaret von Mehren serves as the Chair of the sarcoma NCCN guidelines and has been a valuable player along with her medical colleagues on the evolution of the GIST guidelines over the years. In this webinar, Dr. von Mehren will educate GIST patients and caregivers about these guidelines and provide some case study examples of how guidelines fit into the rubric of patient care. The Life Raft Group will also share insights on real world experiences among the patient community with the guidelines.
REGISTERAbout our presenters:
Margaret von Mehren, MD
Fox Chase Cancer Center
Dr. Margaret von Mehren is Chief of Division of Sarcoma Medical Oncology at Fox Chase Cancer Center. Her research interest focuses in developmental therapeutics for sarcomas and gastrointestinal stromal tumors. She has led investigator-initiated trials, collaborated with other investigators, sarcoma clinical trials group, as well as industry sponsored studies in the testing of novel agents in these rare diseases. Collaboration with the Phase I program and basic scientists at Fox Chase Cancer Center and elsewhere is key to identifying potential novel agents which may have a therapeutic benefit in the treatment of sarcomas. Dr. von Mehren’s work in sarcoma therapeutic development informs her role as the Associate Director of Clinical Research, in which she oversees the development of investigator initiated clinical trials, the scientific review and prioritization process of trials as well as conduct of clinical trials at Fox Chase Cancer Center.

Denisse Montoya, MS
Senior Director, Data Mgmt. & Research, The Life Raft Group
Ms. Montoya has a wealth of experience in clinical evaluation projects including development of protocols, case report forms, informed consent, surveys, tissue repositories, and study initiation She is proficient in data management, preparing research for publication, drug development, clinical trial protocols, onco-pathological/genetical dissemination, and formulating research premises. As the Senior Director of Data Management & Research, Denisse is the principal investigator for study protocol design and strategy of Patient Reported Outcomes (PRO). She has expertise in the analysis, reporting, and dissemination of PRO data and present scientific work.
She leads a dedicated staff in both patient support and in the identification of data trends that may lead to actionable information that will help patients coping with Gastrointestinal Stromal Tumor. In addition, she takes the lead in collaborative research initiatives, including maintaining relationships with potential partners, contributing ongoing data, and supporting hypothesis generation with the goal of increasing patient survival and advancing GIST research.
Denisse holds a Bachelor of Science degree in Biology from Rowan University, and a Master of Science Degree in Biomedical Science from Fairleigh Dickinson University

Virtual GISTer Support Group
2022-04-05 18:00 - 19:30, 2022-03-01 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

GDOL North Carolina - Virtual
2022-03-24 19:00 - 21:00 (America/New_York)
GDOL North Carolina is March 24th – 7pm-9pm ET
A GIST Day of Learning (GDOL) is a free one day event to help patients and caregivers learn more about this rare cancer, find support, and enhance their knowledge base to help them navigate their cancer journey.
The Life Raft Group has a simple focus: to cure a form of cancer — GIST — and to help those living with it until then. To do this, the Life Raft Group focuses on three key areas: research, patient support & education, and advocacy, which lay the foundation of our mission to ensure the survival of GIST patients through a comprehensive approach connecting individual patients’ needs, the worldwide community of GIST advocates and the global health and research environment.
If you have any questions, please contact Diana Nieves at dnieves@liferaftgroup.org
REGISTER
