Our theme for 2019 is Travel with Us on the Path to Survival. GIST patients and caregivers are on a journey, seeking to survive this rare cancer. Our mission is to walk with them on their journey, providing resources to help them not only survive, but thrive. In 2019, there was a strong research component to our efforts, promoting the importance of real world data and real world evidence to enhance traditional research.

Executive Director’s Message

For the past 19 years, the Life Raft Group has been focused on increasing the survival of patients with Gastrointestinal Stromal Tumor (GIST), a rare cancer of the gastrointestinal tract. As partners to patients and caregivers on their GIST journey, we are dedicated to helping patients not only survive, but also to thrive.

What started as an effort on the part of a handful of devoted caregivers to keep their loved ones alive has evolved into a sophisticated and dedicated organization to support those on their GIST journey.

We’ve come a long way from index cards with patient information spread out on my kitchen table to a world-class GIST patient registry with well over 2,000 patients. Our Patient Registry staff increased in 2019, allowing us to provide a greater range of services.

Our collaborative efforts have brought about significant changes in the diagnosis of GIST, with our Pediatric and SDH-Deficient GIST Consortium, which was recognized by the Biden Cancer Initiative, developing an algorithm for accurate and timely diagnosis of SDH-deficient GIST being incorporated into the guidelines of several key professional organizations.

The Life Raft Group continues to elevate its scientific profile by publishing in multiple journals and by introducing our own journal, LRG Science. Our Global Surveillance Group continues to engage the top GIST specialists in collaborative efforts to save lives.

Through our education and advocacy initiatives and our dedicated outreach and engagement efforts, we have expanded our footprint globally, walking side-by-side with our members through our GIST Mentor program, helping them to assure they have access to quality treatment.

We serve as welcoming guides to those who are newly diagnosed, as well as to the long-term survivors who have been journeying with us since the beginning.

Our community has walked together, fought together, learned together, and occasionally cried together. We have had losses, and have celebrated weddings, births and NED status.

With your help and support, we will continue to travel with you on the path to survival in 2020 and beyond. Stop along the way and read our 2019 accomplishments in this annual report.

Early in 2019, we launched LRG Science, which produced 4 issues in the first year.

We developed a real world evidence team that meets on a weekly basis to discuss data that is generated from the Life Raft Group platforms, including our Patient Registry and SideEQ, our side effects management tool.

Our Pediatric and SDH-deficient GIST Consortium continued to meet on a monthly basis, sharing their research progress and discussing cases. Members also collaborated by sharing tissue. Information from our Patient Registry provoked the creation of an algorithm for diagnostic decision making for Pediatric and SDH-deficient patients, which was then fine-tuned by leading pathologists and presented to CAP (College of American Pathologists) and NCCN for consideration in updating their guidelines. In August of 2019, CAP changed their guidelines to reflect this. NCCN is still considering this.

We published four studies in peer-reviewed journals:

Frequent rectal gastrointestinal stromal tumor recurrences in the imatinib era: Retrospective analysis of an International Patient Registry. Emelia Stuart BS Sudeep Banerjee MD Jorge de la Torre MD Yu Wang PhD Norman Scherzer JD Adam M. Burgoyne MD, PhD Lisa Parry MD Paul T. Fanta MD Sonia Ramamoorthy MD Jason K. Sicklick MD. J Surg Oncol. 2019; 1‐ 7. https://doi.org/10.1002/jso.25621  *

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. Call JW1, Wang Y1, Montoya D1, Scherzer NJ1, Heinrich MC2. Clin Sarcoma Res. 2019 Apr 2;9:4. doi: 10.1186/s13569-019-0114-5. eCollection 2019.
Abstract: https://www.ncbi.nlm.nih.gov/pubmed/30984366

Mutational testing in gastrointestinal stromal tumor. Wang Y1, Call J1. Curr Cancer Drug Targets. 2019 Mar 26. doi: 10.2174/1568009619666190326123945. [Epub ahead of print]

Abstract: https://www.ncbi.nlm.nih.gov/pubmed/30914028  *

Genomic aberrations in cell cycle genes predict progression of KIT-mutant gastrointestinal stromal tumors (GISTs). Heinrich MC#1, Patterson J#1, Beadling C1, Wang Y2, Debiec-Rychter M3, Dewaele B3, Corless CL1, Duensing A4, Raut CP5, Rubin B6, Ordog T7, van de Rijn M8, Call J9, Mühlenberg T10, Fletcher JA#2, Bauer S#10,11. Clin Sarcoma Res. 2019 Mar 5;9:3. doi: 10.1186/s13569-019-0112-7. eCollection 2019.
Abstract: https://www.ncbi.nlm.nih.gov/pubmed/30867899

Our Patient Registry department began building the Regional Registry Project. They also developed several surveys to learn more about the patient experience. They have been able to expand the LRG Tissue Bank, as well.

The Life Raft Group held Virtual Tumors Board throughout the year, helping patients around the world. We also participated in multiple collaborative efforts to enhance GIST research.

2020 New Initiatives:

  1. Currently at work on multiple comprehensive projects with pharmaceutical companies
  2. Continuing extensive research on personalized side effects
  3. Launching survey of long-term survivors
  4. Beginning LRG Science Forum where Science Team regularly meets to discuss research
  5. Expanding our collaborations with physicians
  6. Relocation and expansion of our Tissue Bank
We implemented our GIST Mentor program, training seven patients and caregivers to provide individual support for newly diagnosed patients. We also expanded our volunteer base to over 160 patients and caregivers.

We continued to support the GIST community in times of celebration and in times of loss. We offered support for those grieving on our In Memoriam website.

In 2019, we became co-administrators of the GIST Survivor Facebook Group, providing additional online support for patients.

We launched GIST Chat, a replacement email community for our legacy ListServ.

GIST Days of Learning (GDOLS) were held in Los Angeles, Tampa, Portland and New Jersey, providing over 250 patients, caregivers, and new medical professionals with access to the latest information on GIST treatments and research.

Our GIST Do It walks in memory of Ted Wolf were successful fundraisers, with our first New Jersey walk raising both funds and awareness. We awarded the 2nd Wolf Strong award to Chelsea Ozzeri at the walk in New Jersey. In addition, we also held several other successful fundraising events that help us continue our mission.

GIST Awareness Day, celebrated each year on July 13, had strong support from Latin America. Our theme was GIST DO IT All Year Long, with suggestions of how to support efforts on an ongoing basis

The ongoing support of our GIST community continues to fuel our efforts in both research and patient support efforts.

2020 New Initiatives:

  1. Patient and Caregiver Support Groups
  2. Hosting virtual fundraising events (NTFC, GIST Entertainment, etc.)
  3. Expansion of GIST Mentors
  4. Growth of membership through GIST Survivor
  5. Online Store for Cookbook, GIST Art, masks, etc.
At the heart of our mission is the belief that empowered and educated patients have higher survival rates, and that by raising awareness about GIST, we can help save lives.

Educating patients and caregivers, as well as the community-at-large, is a core function of the Life Raft Group. From the initial call that we make to a patient, to webinars presented by medical experts, to a regional GIST Day of Learning meeting, an article in our Newsletter, content on our website or through our biennial Life Fest conference, we are continually empowering patients to take a greater role in their treatment.

In 2019, we expanded content on our website, updating key information and adding more articles on coping with GIST. Through web posts and articles, we continue to educate patients about clinical trials, which was vital in 2019, as several novel treatments were being investigated.

Informative webcasts included presentations on Current and Emerging Medications for GIST;

Medicare 101; Optimizing GIST Treatment; When to Consider Surgery; Creating Your Personal Cancer Survival Plan; Symptom and Side Effects Management; Genetic Testing and SDHx Mutations; GIST Stromal Tumors: A PatholoGists’s Point of View; and The Biology of GIST: What Every Patient Needs to Know. https://liferaftgroup.org/webcasts/

Our Newsletter is an important source of information for our member community with inspiring personal stories, informative articles on the latest trends in GIST treatment, and updates on LRG collaborative efforts worldwide. https://liferaftgroup.org/newsletter-archive/

At all of our GIST Days of Learning, informative presentations reach a larger regional audience, providing important information for patients and caregivers, and allows them to meet face-to-face with GIST experts.

Our Executive Director, Norman Scherzer, was invited to participate at a Roundtable on disparity in cancer treatment in urban areas sponsored by the Biden Initiative. 

The Life Raft Group continues to be a powerful advocate for change for patients and caregivers both nationally and internationally.

We advocate personally on a case-by-case basis for patients to be able to access treatment, as well as participate in several organizations both nationally and internationally as collaborative efforts.

On the international front, we continue to aid patients around the world, while making a vital impact in Latin America.

On a national level, we are active members of OVAC (One Voice Against Cancer), NORD (National Organization for Rare Disorders), the Milken Institute, as well as one of the original members of TRAIN.

2020 New Initiatives:

  1. Virtual events to meet the needs of the community (Life Fest, GDOLs, etc.)
  2. Revamping our educational materials
  3. Working with other advocacy groups to offer our platforms and services
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