As Executive Director, Sara Rothschild brings 17 years of experience with the LRG and in-depth knowledge of the challenges faced in healthcare, and broad experience working in the international community to The Life Raft Group.
Formerly as Vice President of Program Services, she has 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 was part of the initial team that supported the start of 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.
Recently, Sara convened a Pediatric & SDH-Deficient GIST Research Symposium with a distinguished faculty of global clinical experts from prestigious cancer centers. An outgrowth of the research symposium was the formation of the Pediatric & SDH-Deficient GIST Consortium with the aim of extending and sustaining current research efforts, and ultimately finding a cure for Pediatric & SDH-deficient GIST through global collaboration. The Consortium was recently recognized at the Biden Cancer Summit as an innovative solution to accelerate cancer research.
Sara has grown to be a globally respected patient advocacy leader and works well with a diverse network of stakeholders such as medical key opinion leaders, fellow patient advocates, pharmaceutical industry as well as government authorities. 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.
Sara holds a Master’s Degree in Public Health from the University of Michigan, with a focus in Health Management and Policy. She went on to create evaluation modules for the Centers for Disease Control and Prevention, to assess racial and ethnic approaches to community health on infant mortality intervention. In the Middle East, she performed a comparative analysis of health care rationing among Middle Eastern and European countries and its integration into health policy formation.
Laura brings over twenty-five 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 in developing strategic plans to expand the reach of the LRG.
In her former role as Senior Director, Laura successfully built capacity through outreach efforts. She worked closely with membership, state leaders, outside organizations and sponsors to assure that the major programs of The Life Raft Group provide quality education, advocacy and patient support. She successfully raised the LRG’s profile through her participation in numerous collaborations with other organizations and networking.
As Deputy Executive Director, Laura serves as a vital part of the Executive Management Team, representing the organization as spokesperson at key conferences, forming strategic alliances and helping to steer The Life Raft Group in new directions that will help support our mission.
A visionary leader, Laura has extensive experience in fiscal management, program development, volunteer recruitment, and people management. As a change maker, she excels at evaluating staff needs on a personal and department level and making strategic decisions that lead to success. Her leadership skills enhance the overall day-to-day management and administration of Life Raft Group initiatives and guide the staff in achieving organizational goals. Above all, her passion for the patients and caregivers inspires her every day in our mission to enhance the survival and quality of life for GIST patients.
Laura holds a master’s degree in Public Administration from Kean University.
As Founder and former Executive Director of The Life Raft Group (LRG), Norman leveraged his extensive experience in the healthcare sector, to promote the mission of the LRG to cure Gastrointestinal Stromal Tumor (GIST). His distinguished career includes 25 years with the Center for Disease Control, Assistant Commissioner of Health in New York City, HIV/AIDS consultant to the Harvard Institute for International Development, and a bioterrorism and leprosy consultant. However, Norman is most proud of keeping his wife alive for over 22 years despite her cancer prognosis of six months to live in 1994.
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.
Norman has taken urgency and collaboration, the prevailing theme of his public health career, and coupled it with passion to tackle the needs of cancer patients to help them not only survive but thrive. Under Norman’s direction The LRG has become the leader in funding and driving GIST research, including creating the world’s largest GIST patient registry and tissue bank. Keeping the needs of patients as the top priority when interacting with multiple stakeholders, he continually stresses the need to bring the patients’ voice into the research and drug development process. This has ultimately led to cutting-edge collaborative research projects including a novel bioinformatics research study with Columbia University Medical School/New York Presbyterian, The LRG Pediatric & SDH-Deficient Consortium, and an observational side effect study with the FDA. These real world collaborative efforts demonstrates Norman’s passion for “patient-powered science.”
Norman is a Phi Beta Kappa graduate from City College of New York.
He is affiliated with the American Public Health Association, the Watsonian Society, the Connective Tissue Oncology Society, ASCO and was inducted into the GIST Hall of Fame.
He has published multiple scholarly articles in peer-reviewed publications.
Diana brings over twenty years experience in fundraising and development, project management, training and human resources in both the nonprofit and for profit sector to The Life Raft Group.
In her role as Chief Development & Involvement Officer, Diana is charged with busting up silos and eliminating barriers to keep our relationships with members, donors, volunteers, and others focused on our common goal of achieving LRGs mission. She actively cultivates, engages and deepens these relationships so that she can elevate LRG fundraising and volunteering efforts while meaningfully acknowledging contributions made to the LRG and rare diseases overall. She works closely with the senior team and Board of Directors to ensure the development and success of the organization by instilling a culture of community involvement, philanthropy, strategic planning while addressing any development issues within the organization.
Formerly Senior Director of Outreach & Engagement Diana was responsible for engaging and managing relationships with individual and corporate donors, Diana’s in-depth understanding of the importance of The LRG’s mission powers her ability to translate this into encouraging actionable giving. She was responsible for the execution of two major fundraising events per year, generating over $200k in sponsorships and donations, and managing five educational events, reaching over 300 participants per year.
Diana possesses an innate ability to relate to and manage people, including both staff and volunteers, and to discern personal development needs that support individual growth. Her superior organizational skills have resulted in successful strategic and marketing plans for The LRG, and her project management skills have resulted in increased operational efficiencies while serving in her former role as Director of Operations.
Diana holds a Master of Public Administration degree from New York University, and a Bachelor of Business Administration from Adelphi University.
Denisse Evans, MS, Senior Director, Data Mgmt. & Research
Denisse 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 has presented on a national and global stage addressing various topics related to data management, market research, clinical trial protocols, patient reported outcomes and patient advocacy with a primary focus on rare cancers such as Gastrointestinal Stromal Tumor. She has contributed and led several seminal studies published in peer-reviewed journals.
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
Sahibjeet Parmar, MPH, Director Data Mgmt. & Research
Sahibjeet brings experience in both the healthcare and nonprofit sectors to The Life Raft Group. She has a demonstrated history in quantitative and qualitative data analyses with strong attention to quality control.
In her role as the Director of Data Management & Research, Sahibjeet is responsible for a team of data management and research associates and data analysts in their day-to-day support of LRG patients and data science.
As the point person of the Life Raft Group’s GIST Patient Registry and GIST Collaborative Tissue Bank, Sahibjeet oversees the operations of these platforms including direct patient contact including outreach, medical updates, email community support, patient education, biospecimen handling and research collaborations. She deploys her extensive medical knowledge as well as her ability to educate and empower patients. During her previous role as the Patient Registry Supervisor, Sahibjeet created an standard operating procedure for Patient Registry quality control, which has been the driving force behind the accuracy of patient-reported data. Sahibjeet also works closely with the LRG’s in-house program developer to develop, test, and maintain the Registry through its various stages.
Sahibjeet is a part of our Real World Evidence Group and Science Forum, contributing ongoing patient-provided data and supporting hypothesis generation with the goal of increasing patient survival. She presented at national and international conferences with a focus on sarcomas, data, and research. Sahibjeet has published in The LRG Science Bulletin and has also contributed to peer-reviewed journals.
She is an integral member of the collaborative National Institutes of Health (NIH)/LRG Virtual Tumor Board, a vehicle that enables medical professionals worldwide to convene and discuss challenging cases in a virtual environment. Sahibjeet is dedicated to using real world data to improve health survival and quality of life of patients and ensuring that no patient feels alone. She is passionate about being a voice for patient community and bridging the gap between patients and the healthcare world.
Sahibjeet holds a Bachelor of Science degree in Public Health from Rutgers University, New Brunswick, and a Master’s degree in Public Health from the same institution.
Antoinette Pauwels, MPH, Data Mgmt. & Research Associate/Development & Involvement Associate.
Toni brings a wealth of experience in public health issues to the Life Raft Group. Her knowledge of video production and social media brings additional value to the organization.
In her role as Data Management & Research Associate, Toni is a vital member of a team of patient monitoring coordinators and data analysts who provide day-to-day support of LRG patients. She participates in direct patient contact including outreach, medical updates, email community support and patient education, deploying her knowledge of medical information related to GIST, as well as in educating and reassuring patients and caregivers. Toni also supports the Development & Involvement team planning educational events and fundraising events for our community.
Prior to joining The Life Raft Group, Toni was finishing a Bachelor of Arts in Applied Arts and Sciences in Public Health from Rutgers University. Toni has served in multiple roles within the nonprofit and health arenas, teaching drowning prevention, serving as a pharmacy technician, and working in fundraising for cancer awareness. She worked as a Research Assistant while an undergraduate at Rutgers, for a study analyzing the drinking water. She served as a Video Intern, providing production services and social media content for Children and Screens, a research organization studying the impact of digital media on children.
Toni holds a Bachelor of Arts and Applied Sciences in Public Health from Rutgers University and a master’s in public health with a concentration in Epidemiology from NYU.
Eddie brings a wealth of both technical expertise and digital communications experience to our LRG Communications Team. His ability to customize solutions to varied audiences make him an asset in an environment with rapidly changing priorities.
Eddie is charged with the overall technical maintenance of the LRG Website, as well as with the optimization of both layout and content management. His oversight of analytics helps to elevate the online profile of the LRG and to evaluate the impact of our messaging strategy.
For Prudential, he served as the Manager for Internal Communications. Eddie managed employee portals, which included creating content, editing pages and troubleshooting site issues. He reviewed and assessed all web content to determine usefulness and impact. In this role, he also led a major site redesign project. His strategies were key to improving employee engagement in several initiatives.
In previous positions for Verizon and for Rutgers, The State University of New Jersey, Eddie worked in the Human Resources and Benefits realm, resolving both IT issues and digital content management, as well as designing and implementing presentations and seminars.
Eddie holds a Master of Business Administration from Rutgers, with a Specialization in Management and Business Strategy.
Additionally, he holds a Bachelor of Arts degree in Psychology, Cum Laude from Fairleigh Dickinson University.
Robin brings over thirty-five years’ experience in financial management, accounting and business management to the Life Raft Group.
Prior to coming to the LRG, she held increasingly responsible positions, overseeing complex financial infrastructures. She has served in various accountancy roles, including Assistant Tax Accountant, Senior Cost Accountant and General Accountant.
Her attention to detail and in-depth knowledge of administrative, financial, and accounting functions contributes to the efficient management of the LRG’s Finance Department. Possessing superior communication skills, she works effectively with all levels of personnel, assuring that vital financial functions are accurately reported, and timelines met.
Robin oversees both accounts payable and accounts receivable, and tracks donations, grants, corporate and pharma sponsorships and other income. She reconciles and pays monthly credit card bills.
She is proficient in identifying cost efficiencies and providing strategic solutions that result in substantial savings.
Responsible for payroll administration and timekeeping, she additionally administers health, life, 401K and other insurance coverages.
She prepares financial reports for the entire organization and manages the audit process with an outside accounting firm.
Robin studied Accounting at Rutgers University, Newark.
Allison brings over 17 years of experience in the business world to The Life Raft Group. Her superior organizational skills and capacity for analysis enable her to manage the multiple tasks required in assisting the Executive Offices of The Life Raft Group. In her role as Administrative Director, she is tasked with the management of administrative responsibilities as well as various special projects.
Her research and analytical skills are utilized daily, as she contributes to projects involving the investigation and research of topics as requested by the Executive Director. Allison maintains reports from department heads and works closely with both the Deputy Executive Director and the Finance Director. She maintains ongoing contact with the Board of Directors, as well as with important contacts.
Mrs. Russo previously held positions in the world of Finance and Investments. As Assistant Vice President for major fund of hedge funds, she researched hedge funds, performed due diligence and formulated in-depth analysis on all hedge fund investments. She maintained ongoing communication and conducted meetings with clients and investors in order to monitor and convey recommendations to all interested parties.
Allison holds a B.S. in Business Administration with a major in Management Information Systems from the University of Arizona, Eller College of Business, Tucson, AZ.
Carol brings over twenty years’ experience in graphic design, writing, and marketing to The Life Raft Group and is currently the Director of Communications.
Formerly the Web and Design Associate, Carol designs and creates copy for The LRG website, as well as the LRG Newsletter and other LRG publications. She is a skilled interviewer, interacting effectively with patients, caregivers and medical professionals in creating content to further our mission. A valuable member of the Communications Department, she works well with the entire staff, aiding them in communicating The LRG message.
She has in-depth experience in the nonprofit world, having served as the Creative Director and Marketing Coordinator for Country Ark Farm, and the for profit sector as a Marketing Designer for a major book publisher, Creative Director for a full service ad agency, as well as a freelance journalist and graphic designer for many years.
Carol holds a Bachelor of Arts degree from Burlington College in Writing & Literature. Her undergraduate studies included terms at the School of Visual Arts, NYC and Moore College of Art, Philadelphia, studying illustration and graphic design.
Brianna Enciso is a driven and enthusiastic professional with a strong background in business administration and marketing. She has a Bachelor of Science degree in Business Administration, concentrating in Marketing, from Montclair State University. Brianna brings a solid foundation of knowledge and skills to her professional endeavors.
During her academic journey, Brianna engaged in a variety of coursework that equipped her with a diverse skill set. From mastering elements of business and international business to honing her analytical skills through spreadsheet modeling, she demonstrated a commitment to excellence in her studies. As part of a culminating project, she collaborated with her peers to develop strategies that improved the productivity and brand image of an international business, showcasing her ability to think critically and contribute to real-world solutions.
With a heart for caregiving, Brianna has experience with roles in the healthcare industry. As a Home Health Coordinator at Cedar Crest, she efficiently managed resident files, scheduled patients, and facilitated communication with doctors, ensuring the smooth operation of vital healthcare services. Her attention to detail and commitment to providing excellent care were further exemplified during her tenure as a Nurse Practitioner Assistant. In this role, Brianna demonstrated her ability to multitask effectively by managing patient information, conducting COVID-19 tests, and ensuring compliance with HIPAA guidelines. Her compassionate approach and dedication to patient care left a lasting impact on both employees and residents.
Brianna’s commitment to making a difference extends beyond her professional endeavors. She has been recognized for her academic achievements, earning a place on the Dean’s List at Montclair State University in both the fall and spring semesters of 2020. Her bilingual proficiency in English and Spanish, coupled with her people-oriented nature and leadership skills, allows her to connect with diverse audiences and foster meaningful relationships.
Now, Brianna is excited to embark on a new challenge as an Associate Development Manager. In this role, she will leverage her skills and experience to assist with donor cultivation, engage corporate sponsors, manage event logistics, and coordinate fundraising appeals. Her ability to connect with others, coupled with her fundraising experience and community engagement skills, positions her as a valuable asset to the organization.
Piga brings over twenty years of experience in the world of sarcoma/GIST. A GIST patient who was diagnosed incorrectly in 1995 with leiomyosarcoma, she understands the importance of correct diagnosis and access to treatment.
Located in Santiago, Chile, Piga has been a Global Relations Consultant for The Life Raft Group since 2009.
In 2001, she founded and is the Executive Director of Fundación GIST Chile, a nonprofit organization dedicated to support GIST and other gastrointestinal patients through education, information, emotional support and advocacy, with the goal of having them experience a better quality of life.
Additionally, she is the Coordinator of Alianza GIST, a consortium of GIST groups in Latin America.
She plays an integral role in working with our international patients, to assure they receive the quality of care necessary to survive and thrive.
Her advocacy efforts in Chile have led to important changes in her country, impacting both legislative change and raising awareness for rare diseases.
Rebecca brings a wealth of experience in the non-profit sector in grant writing and funding strategies. Her superior writing and research skills consistently have led to funding opportunities for the organizations she supports.
As the Community Health Coordinator for the Raritan Bay Area YMCA, Rebecca provided a strategic approach to obtaining funding from major stakeholders. Her ability to forge collaborative relationships that result in the realization of major initiatives is an asset to every organization she aids.
Rebecca currently heads up Let’s Get Funded, LLC, an organization that offers grant writing services to nonprofits seeking to organize and streamline their grant proposals.
Rebecca holds a Bachelor of Arts degree in Psychology from Rutgers University. She is pursuing a master’s degree in Public Health from the University of South Florida.