THE LIFE RAFT GROUP
Message from the Executive Director
Board of DIrectors
Table of Contents
Allocation of Funds
Patient Support & Education
Norman Scherzer Executive Director
Everything we did in 2016 was focused upon providing gifts of time, from the mundane sharing of a cup of coffee on a remote beach to the elaborate celebration of the arrival of a new grandchild. We relentlessly tied together everything we had learned about navigating the daunting world of cancer survival, using the global resources of our patient registry and tissue bank, our hands-on educational and advocacy efforts and our cutting-edge research. We pressed on, creating new platforms to manage side effects and share data across otherwise competitive research institutions and developed new collaborations, the latest being one with Columbia University Medical Center/NYPresbyterian Hospital.
We analyzed our data and maintained our clinical trials directory searching for new paths to survival and we fought countless battles to enable patients and their caregivers to avoid and, if not, to survive medical mishaps and logistical and fiscal black holes.
And, as is our tradition, we paused on too many sun downs throughout the world to light candles to celebrate the lives of those we had lost.
On September 29th, I watched my wife close her eyes for the last time. We had run out of options.
Given six months to live in 1994, Anita was to endure nine surgeries, two rounds of chemotherapy and one round of radiation until we found Gleevec in 2000. For 16 more years she struggled on, beating off countless other insults to her body.
My appeal to you for your help in donating tissue, time and money to buy time for someone perhaps can best be captured by the poem I wrote in Anita’s memory. It defines time better than any survival statistic.
Message from the executive director
Just One More Day
Just one more day dear
Please let it be
Don’t close your eyes yet
Don’t give up on me
What can I do
To keep you alive?
Dear God please tell me
That she can survive
So many years
Just you and me
What could it matter God
One more day to see?
Give me a chance
Just to say goodbye
Maybe one more hug
Maybe one more sigh
Just one more day dear
Please let it be
Don’t close your eyes yet
Don’t give up on me
Norman Scherzer In memory of Anita Scherzer
LRG Research Team members, meeting with Norman Scherzer.
Pictured left to right: Dr. Matt van de Rijn, Dr. Sebastian Bauer, Norman Scherzer, and Dr. Jonathan Fletcher
In addition to supporting traditional clinical research, The Life Raft Group remained dedicated to the concept of patient-powered science. With a strong belief in the impact patient data and tissue can have on research, we persistently strengthened both our Patient Registry and the GIST Collaborative Tissue Bank.
The LRG also continued to provide funding for members of our research team. Progress has been made in several areas, including genomic sequencing, drug screening and the understanding of disease development.
To date, members of the team have:
Developed multiple GIST cell lines and mouse models to better understand GIST biology, and have made them available to the larger research community
Identified numerous molecular targets for GIST therapies, including HSP90, PI3k and MAPK
Greatly expanded understanding of quiescence and apoptosis, which led to several new GIST-targeted compounds
Identified cellular factors such as p3 and DOG1 that determine how GISTs develop
Evaluated the entire GIST genome to better understand drug resistance
Led the field of high-throughput genetic analysis, serving as a resource to researchers
Screened hundreds of compounds to assess their effectiveness against GIST
Demonstrated drug cycling & potential efficacy for GIST, an approach currently being used in multiple clinical trials
We laid the groundwork for the proof-of-concept for InterGR, an interactive cloud-based platform for global researchers and patient groups to store, visualize, share and analyze health data, leading to accelerated patient outcomes. InterGR will have a key function in our collaborative research project with Columbia Medical Center/NYPresbyterian in 2017, storing the clinical and molecular data from study participants.
Our patient-powered science focus is what led to this partnership. The combination of Columbia’s innovative technology and our rich clinical data and tissue bank holds promise for new targeted treatments for GIST. This landmark project is an example of the power of collaboration between a patient advocacy group and a major academic center to conduct innovative research.
Our Patient Registry continued to be an invaluable source of research information, providing empirical information to help increase survival for GIST patients. With new functionality, it is a powerful model for patient reported data that provides life saving information. We presented the registry as a model for other organizations at meetings such as NCATS (National Center for Advancing Translational Science) and Salud con Datos, as well as institutions such as OHSU.
With the intention to expand our acclaimed patient-driven GIST Patient Registry online and into the hands of patients so that they can contribute and interact with their medical data quickly and more directly than ever before, our Scientific Operations team developed GIST PRIME, an enhanced patient registry due to launch in 2017.
We launched SideEQ, our free interactive platform which enables people living with cancer to track and manage their side effects so they can improve their quality of life and thrive despite cancer treatment. The ability to input, track and share side effects through a personal dashboard makes it a powerful tool for patients and healthcare professionals.
Our GIST Cancer Journal provided high level information about GIST by top medical experts to the medical and research community. There were four issues published in 2016, reaching an audience of over 10,000 readers each issue. The LRG continued to pursue partnerships and networking with experts in the field by attending ASCO, CTOS, and the World Orphan Drug Congress, as well as reaching out to other disease organizations to create synergy for the concept of patient-powered science.
Patient support and education are a vital part of the Life Raft Group’s mission to save lives. In 2016, we continued expanding our reach with six GIST Days of Learning (GDOL) held in Portland, Chicago, New York, Miami, St. Louis and San Diego. We continued to provide remote education through our webcast series, with topics ranging from “Navigating the Medicare Maze,” to an in-depth look at kidney toxicity for patients on sunitinib and imatinib.
We launched a campaign to educate patients with the advent of generic imatinib, providing information on the web, presenting a webcast, and offering information at in-person meetings.
Six newsletters, which provided information and education, were published, as well as an issue that celebrated our biennial Life Fest celebration. Our nutritional series continued with articles on Absorbing Nutrients After Surgery, and What Is Angiogenesis? We also featured an article on cardiovascular health.
Our community continues to be a source of support and vital information for GIST patients. We currently have 32 leaders representing 26 states. Internationally, we have representatives from 60 different countries.
We celebrated the impact our volunteers have made on our organization by thanking them in April for Volunteer Appreciation Month.
2016’s fundraisers included our second annual “Water of Life” fundraiser, spearheaded by Dr. Matthew J. Lurin and our 13th Annual “Night to Fight Cancer”, hosted by board president Jerry Cudzil.
We hosted a Virtual GIST Tumor Board in May in which two pediatric Wildtype GIST cases were presented to a team of global experts. This tumor board impacted the care and management of these young survivors in order to direct them towards the best care and treatment options.
The LRG participated in the NIH Pediatric and Wildtype Clinic, where patients interacted with leading experts in the field. We continued to provide Virtual Tumor Boards, allowing patients who cannot easily travel to a center of excellence access to expert consultation in a virtual environment.
Our third GIST Awareness Day, an annual event designed to educate and inform the public about GIST, launched a new theme: #GiftofTime. With an hourglass as the symbol, members and friends of the LRG were invited to share the “gifts of time” they have been granted by posting them on social media. Photos from countries around the world including India, the Philippines, Guatemala, Mexico, Italy and Colombia, celebrated the theme, culminating in a large display at our Life Fest celebration in July 2016.
Life Fest was held in Redondo Beach, California, bringing together over 150 participants and presenters for a weekend of informative sessions and networking. Honorees included Drs. Jason Sicklick and Ron DeMatteo. Highlights included an inspiring keynote address by Dr. Monica Anderson, an innovative track for Wildtype patients, and the debut of our “16-Year Celebration of GIST Treatments” video. An inspiring interpretive hula dance by Marie and Alia Coleman brought the community together in a remarkable way.
We hosted our first Salud con Datos meeting of Latin American stakeholders to discuss data sharing and collaboration in Latin America among patients, clinicians, researchers, and data scientists. This collaboration led to successful networks established in Latin America. Two meetings with a global focus were held in Spain. The sixth annual meeting of Alianza GIST brought together representatives from four Latin American countries to discuss advocacy issues and set goals for the coming year. The annual New Horizons conference hosted representatives from 20 countries to discuss critical information about GIST that impacts the global patient and medical communities.
Salud con Datos participants build partnerships for future work in Latin America
PATIENT SUPPORT & EDUCATION
Advocacy was an ongoing focus of the Life Raft Group throughout 2016. Our initiatives continued to expand globally with the overall goal of assuring that all GIST patients have access to quality medical treatment.
The LRG continued to forge strategic alliances with other organizations, participating in the OVAC (One Voice Against Cancer) Lobby Day in Washington, D.C. Our representatives once again took to the Hill to encourage representatives to support funding for cancer research through the NIH, NCI and CDC.
On a local level, we supported New Jersey Bill A-2337, which requires health insurers to limit patient cost-sharing and provide an appeals process concerning certain prescription drug coverage. This was supported by the New Jersey Out-of-Pocket Prescription Drug Coalition (NJ OOP Cost Coalition). The bill is still pending, but we will continue to advocate for its passage.
We made a statement amidst the controversy over charitable giving patient assistance programs, committing to the premise that patients shall be held harmless from the infighting between government, pharmaceutical companies and private agencies. We are against any legislation that makes it more difficult for a cancer patient to receive life saving treatment.
Our Executive Director, Norman Scherzer, was invited to Vice President Joe Biden’s Cancer Moonshot Summit, an event designed to bring together scientists, oncologists, donors, patients and advocacy organizations to help accelerate the pace of cancer research.
Strengthening our international ties, Executive Director, Norman Scherzer also attended the 21st Annual meeting of the Connective Tissue Oncology Society (CTOS), where he continued discussions with European colleagues from the Sarcoma Patients EuroNet (SPAEN) around the issue of the high cost of drugs repurposed for other cancers. He also met with SARC (Sarcoma Alliance for Research through Collaboration) to discuss potential collaborations. We continued to support the efforts of Henzo Kenya, a CML and GIST advocacy organization headquartered in Nairobi, Kenya.
GIST Chile continued to be an example of advocacy in action. Their Facebook campaign for World Cancer Day, “We Can…I Can”, brought attention to their efforts. Piga Fernandez represented the GIST community at a press conference on gastric cancer, calling attention to the work that GIST Chile is doing to build their own patient registry.
The LRG attended events such as the National Organization of Rare Diseases’ 2016 Summit, where we shared information about our new platform, SideEQ.
We continued to collaborate with CTTI (Clinical Trials Transformation Initiative) to develop new paradigms for clinical trials, participating in the CTTI Patient Groups and Clinical Trials Summit, as well as serving on the Mobile Clinical Trials task force.
The LRG also supported the 21st Century Cures legislation throughout 2016 with a letter writing campaign and social media outreach. The law was eventually passed.
Marisa Bolognese (right) joins with LRG members to advocate on the Hill.
Norman Scherzer joins with other sarcoma advocates at the 2016 CTOS conference.
ALLOCATION OF FUNDS
LRG Board of DIRECTORS
2016 brought a recognition of how precious the gift of time is. We experienced several losses that impacted the Life Raft Group in a powerful way.
Board of Directors member, Chris Carley passed away, having valiantly fought GIST for over 16 years. His passion for life and helping people was an irresistible force. Chris was Patient Number Two in the first GIST clinical trial. He helped to accelerate the delivery of STI-571 (Gleevec) to all the patients in the Phase II trial. He was a guiding force in the early days of the LRG.
We also said goodbye to Board of Directors member, Larry Selkovits and his wife Shelley. Larry’s unfailing generosity provided many of our members with scholarships that enabled them to attend Life Fest meetings, obtaining valuable knowledge and networking with other GIST patients.
A profound loss for all of us at the Life Raft Group was the passing of Anita Scherzer, Executive Director Norman Scherzer’s wife. Anita inspired the movement that became the Life Raft Group, fighting her 22-year battle with GIST with dignity, strength and unwavering commitment to her family and friends.
We will continue to hold a special place in our hearts for them, and all the LRG members who left us in 2016, and will work diligently to assure that other GIST patients are given the gift of time.
Larry & Shelley
In Loving Memory
for the individuals and businesses whose generosity make our work possible.
We are grateful
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