“Do not follow where the path may lead. Go instead where there is no path and leave a trail.”
-Ralph Waldo Emerson
In the year 2000, for patients with Gastrointestinal Stromal Tumor (GIST) there was no path until the groundbreaking research that led to the discovery of imatinib as an effective treatment. Before then, traditional chemotherapies had failed. Trailblazers brought about a change in this landscape. The road less traveled is often a road that leads to a gift of time for cancer patients and their families. As the landscape changes, new paths need to be forged, new roadmaps made.
Norman J. Scherzer
Norman Scherzer was a trailblazer. From the early days, he brought his passion, his enthusiasm, and his experience in the world of communicable disease to the path created by the Life Raft Group. His love for his wife, Anita, and the mission to keep her alive established a new path for GIST patients and caregivers that is clear and leaves behind a trail to follow.
Norman has been Executive Director of The Life Raft Group since its founding in 2002. Under his leadership the organization has grown exponentially. Today the Life Raft has thousands of members world-wide. Over the last 20 years the LRG has raised over $9 million for GIST research teams in the US and Europe. Key initiatives have included the establishment of a registry with over 2,000 patient clinical histories from over 69 countries, a GIST tumor bank with over 800 patient tumor samples, one of the first databases documenting GIST therapy side effects, and a thriving team of GIST patient mentors – all patient led and supported. The LRG has also extended its successful support model to assist other rare cancer patient groups.
As Norman retires some may fear that our path that has served us well, will not be the same. As we move forward into a new landscape that includes groundbreaking tools to identify targets, and methods of uncovering new rare subsets of GIST, we look to learn from our new trailblazers, and will forge new paths. Our experience in supporting GIST patients will help us guide others with rare diseases.
Leading the way is new leadership, experienced leadership, ready to explore new ways to support what will always be our mission; To enhance survival and quality of life for people living with GIST through patient-powered research, education and empowerment, and global advocacy efforts. The Life Raft Group is pleased to announce that Sara Rothschild, former Vice President of Programs and a 17-year veteran of the LRG will be assuming the position of Executive Director. As Vice President of Program Services, she successfully facilitated the growth of The LRG to become the premier source of education and support for the international GIST community. Her priority has been the dissemination of health information and education through in-person and virtual events for patients and their families. She has organized and coordinated previous GIST Days of Learning, Life Fest, New Horizons GIST, and Salud con Datos meetings in different locations around the world.
Sara played a key role in starting the first National Institutes of Health (NIH) in-person clinic for Pediatric GIST patients. When challenged by decreased funding, she found a solution in virtual technology, helping to create the collaborative NIH/LRG Virtual Tumor Board, a vehicle that enables medical professionals worldwide to convene and discuss challenging cases in a virtual environment. Sara was also invited to the Biden Cancer Summit in 2018 to announce the launch of the Pediatric & SDH-Deficient GIST Consortium that she launched to extend and sustain current research for the Pediatric GIST community.
Dr. Jill Biden, Norman J. Scherzer, Sara Rothschild, then Vice-President Joe Biden at the Biden Cancer Summit in 2018
Passionate about working with the patient community, Sara is dedicated to supporting and educating patients about their health choices. She continually seeks and finds innovative strategies to help those living with a rare cancer find access to life-saving treatments. As a liaison with numerous international support organizations, Sara is widely respected for her advocacy efforts on behalf of GIST patients. Her work with the medical and pharmaceutical communities has led to several powerful collaborations. Sara holds a master’s degree in Public Health from the University of Michigan, with a focus in Health Management and Policy.
To quote Sara: “There is no doubt that the LRG would not be where it is today without the vision and leadership of Norman. Norman’s public health background coupled with his natural curiosity about a rare disease and passion to save his soulmate Anita’s life shaped the LRG into the strong organization it is today. Norman has been an incredible mentor to me for the past 17 years. I am grateful for all these years of learning and growing under his leadership and I am excited for this opportunity to lead the organization into its next chapter after celebrating its 20-year anniversary.”
Supporting Sara is Deputy Executive Director, Laura Occhiuzzi. Laura brings over thirty years of healthcare and nonprofit experience to The Life Raft Group. A seasoned leader, her strength lies in implementing programs to facilitate learning and generate change as well as overseeing daily operations that support organizational goals. Her prior experience as a healthcare executive for a major children’s hospital helps Laura in designing and developing new initiatives, as well as developing strategic plans to expand the reach of the LRG. Laura holds a master’s degree in Public Administration from Kean University.
Together, supported by an experienced and dedicated staff, these visionary trailblazers will forge new paths, and will guide our beloved GIST Community on the road ahead.
In his new role as Executive Director Emeritus, Norman will step back from day-to-day operations to focus on his passion as ambassador and chronicler of the journey of the Life Raft Group up to and through our 20th Anniversary year when we will celebrate our shared story.
We celebrate twenty years of progress. We ask that you consider donating to us at this defining moment as we forge new paths for the future, honoring Norman’s legacy.
