As Founder and Executive Director of The Life Raft Group (LRG), Norman leverages 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.
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.
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 and in overseeing daily operations that support organizational goals.
As Senior Vice President, 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.
In her former role as Senior Director of Outreach and Engagement, 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 profile through her participation in numerous collaborations with other organizations, and through championing our first LRG GIST DO IT walk.
Her 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 and to bring awareness about GIST to the general public.
Laura’s superior organizational skills and the ability to work under tight deadlines contribute to the success of the programs she spearheads.
A visionary leader, Laura has extensive experience networking, marketing, grant writing and coordinating volunteers as both a professional and in a volunteer capacity. Her leadership skills enhance the overall day-to-day management and administration of key Life Raft Group initiatives, guiding the staff in achieving organizational goals.
Above all, her passion for the patients and caregivers inspire 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.
Sara Rothschild, MPH, Vice President, Program Services
Sara Rothschild brings in-depth knowledge of the challenges faced in healthcare, and broad experience working in the international community to The Life Raft Group.
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.
Pete Knox brings over fifteen years experience in both the healthcare and non-profit world to The Life Raft Group. He is an accomplished leader, with extensive experience in patient advocacy, strategic planning and management.
As Senior Director, Research, Pete is a key member of the Real World Evidence Team, utilizing his analytic skills to provide strategic oversight of The Life Raft Group’s research and data platforms. In this role, he identifies and develops potential collaborations with institutions and organizations that utilize data to advance research, with the goal of improving overall survival and quality of life for GIST patients.
Overseeing a team including a Real World Data Scientist, Data Analyst, and IT consultants, Pete explores current trends in cancer data and treatments, and examines data from The LRG and healthcare institutions that are key to uncovering information that supports these goals.
As a member of the senior management team, Pete advises the executive group on ways to elevate the organization’s scientific and data profile.
His background as an educator contributed to the development and success of The LRG’s Expert Patient Training course for patients and caregivers. His ability to synthesize, translate, and teach complex scientific concepts clearly and thoroughly is a valued by staff and members alike.
Pete’s experience in IT has enabled him to oversee complex projects, including redesign of The LRG website, introduction of a new donor database system and the introduction of cutting-edge technology which powers LRG educational platforms. As the point person for evaluating outside institutions’ ability to provide data for our new platforms, this experience is valuable.
With a strong background in communications, Pete has represented The Life Raft Group at numerous international conferences and advocacy events.
Pete holds a Bachelor’s Degree in Communication from Rutgers University, and a Masters of Public Policy with a concentration in Environmental Health and Science Policy, Economics and Quantitative Methods, also from Rutgers.
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 Senior Director of Outreach and Engagement, Diana is charged with connecting and engaging patients and caregivers to information, support and advocacy initiatives.
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 is 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.
Mary Garland brings over twenty-five years of experience in healthcare, counseling, marketing and communications to The Life Raft Group.
With an in-depth knowledge of the patient experience from her career as a mental health and addictions counselor, she is able to discern appropriate content for LRG members and to create educational and informative articles through publications and the website. Her experience working as a Marketing and Communications Director for a healthcare technology firm provides her with an understanding of how to raise both brand awareness and to convey clear messaging to stakeholders. In her role as educator, she has developed the ability to convey complex concepts to a general audience, as well as to provide staff with tools to represent the LRG.
Overseeing the communications staff, she is charged with oversight of all LRG communication vehicles, including publications, materials, email communications, social media and the website.
Mary holds a Bachelor of Arts degree in English from Montclair State University, and a Master of Arts degree in Counseling Psychology from the same institution.
She holds a teaching certificate in secondary education, and formerly a certification in Addictions Counseling.
Matthew Mattioli, AA, Director, Marketing & Operations
Matthew has over 13 years experience in the nonprofit sector. His experience encompasses operations management, IT support, event planning and execution and design.
As Director of Marketing & Operations, Matthew oversees a staff in the day-to-day operations of The Life Raft Group. He is able to direct and assure both internal and external customer service, providing oversight and execution of inventory, purchasing, computer and hardware issues, relationships with outside vendors and building management, providing support materials for outside events, mailings and any issues within the office that require attention.
Actively involved in the planning and execution of key LRG events such as Night to Fight Cancer, and Life Fest, Matthew utilizes his creative skills to envision thematic design plans for each event. Leveraging his negotiation skills, he consistently researches and secures venues for events that enhance their success.
His design skills consistently reflect both The LRG brand and also clearly reflect the messaging and purpose of each individual campaign. His knowledge of the power of digital media aids in formulating strategies to engage stakeholders.
Matthew is proficient in leading computer hardware and software systems that power the work of The Life Raft Group.
His personal experience supporting a loved one with GIST has provided him with empathic skills that aid in his interactions with both patients and caregivers.
Matthew holds an Associate Degree from Berkeley College.
Denisse brings over six years of experience in the medical field to The Life Raft Group.
In her role as Director of Patient Registry, Denisse is responsible for the overall oversight of the registry, overseeing a team of patient monitoring coordinators and data analysts in their day-to-day support of LRG patients. Overseeing the direct patient contact including outreach, medical updates, email community support and patient education, she deploys her in-depth knowledge of medical information related to GIST, as well as her ability to convey information in clear layperson’s terms.
Denisse is an integral part of the continued data collaboration, Salud con Datos, an effort to coordinate data on GIST from several Latin American countries. Additionally, she oversees The Life Raft Group GIST Collaborative Tissue Bank, coordinating tissue donation from patients and triaging its use in mutational testing and tissue microarray. She is part of The LRG Real World Evidence Group, contributing ongoing data and supporting hypothesis generation with the goal of increasing patient survival. In this role, she has presented at national and international forums on patient-provided data.
Denisse has served in the role of Medical Translator and Research Assistant before joining The Life Raft Group. She holds a Bachelor of Science degree in Biology from Rowan University, and a Master of Science Degree in Biomedical Science from Fairleigh Dickinson University.
As Director of Outreach and Engagement for The Life Raft Group, Jess brings superior customer service and planning skills developed in the retail, restaurant and hospitality industries. Jess is charged with building capacity through outreach and engagement efforts.
Her ability to engage members and donors including membership, state leaders, outside organizations, volunteers and sponsors results in increased awareness of The Life Raft Group and its mission.
Jess plays an integral role in assuring that LRG events, whether for fundraising or educational purposes, are successfully planned and executed. As a primary point of contact for LRG events, Jess utilizes her experience in hospitality and restaurant service to assure that each event runs smoothly, from the early planning stages working with vendors and other stakeholders to the execution of the project and the follow up evaluation.
Her organizational skills in dealing with the day-to-day operations provide a positive experience for both the internal and external customers she served. Her proficiency in DonorPerfect, the CRM for The LRG, aids in the overall efficiency of mailings and campaigns for multiple departments.
Jess is a team player, working collaboratively with all departments on projects as wide-ranging as GDOLs, Life Fest and GIST Awareness Day to our successful Night to Fight Cancer and Water of Life Events. She represents the LRG at a number of meetings with key stakeholders.
Jess holds a Bachelor of Arts Degree from the University of Colorado in International Affairs.
Sahibjeet brings experience in both the healthcare and nonprofit sectors to The Life Raft Group.
In her role as Patient Registry Supervisor, Sahibjeet is responsible for oversight of the registry, working with a team of patient monitoring coordinators and data analysts in their day-to-day support of LRG patients.
Overseeing the direct patient contact including outreach, medical updates, email community support and patient education, she deploys her knowledge of medical information related to GIST, as well as her ability to educate and assure the patients.
Ms. Kaur is part of The LRG Real World Evidence Group, contributing ongoing patient-provided data and supporting hypothesis generation with the goal of increasing patient survival.
Before coming to The LRG, she completed an internship in health safety, and worked as a Physical Therapy aide, working with patients to completed their exercise plan. Her nonprofit experience includes working with Let’s Share a Meal, an international organization helping with food insecurity.
Sahibjeet holds a Bachelor of Science degree in Public Health from Rutgers University, New Brunswick, and is pursuing a Master’s degree in Public Health from the same institution.
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.
Helena brings high-level organizational and customer service skills to The Life Raft Group, developed in both the retail and nonprofit environments. Her primary role is spearheading a number of special initiatives, participating in the project management from inception to completion.
As a key member of the Administrative Operations Team, Helena also serves as backup to the Office Manager, overseeing and executing vital functions such as correspondence, mailings, input and update of membership information into The LRG donor database, generation of reports, tracking office supplies, assisting with events and office functions, and supporting other departmental needs.
She plays an important role in helping patients by working closely with the Patient Registry staff to track information about patient side effects by monitoring our ListServ. Her sensitivity and calm demeanor make her an asset when dealing with calls from patients and caregivers. She is able to present information in a clear and concise manner.
She works well with all levels of personnel, providing timely, efficient and superior customer service skills. Proficient in Microsoft Word, Excel, PowerPoint and Adobe Photoshop, she is able to provide support in creating, editing and producing materials. Able to work independently, she adapts quickly to a fast-paced environment with often challenging deadlines.
Helena holds a Bachelor of Arts degree in Secondary Education and English from Ramapo College.
Jordanne brings a wealth of experience in community health and education to the Life Raft Group. Her skills working in a research environment make her a valuable member of the Patient Registry Team. Her course work in Epidemiology, Applied Statistics in Public Health, Program Planning & Evaluation and Health Policy and Education adds to the knowledge base of the team.
In her role as Patient Registry Associate, Jordanne 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.
Jordanne acquired valuable skills working as a Community Program Director for COPE Center in Montclair, NJ, a a non-profit agency that strengthens communities by helping people overcome challenges with drugs, alcohol, family and AIDS. In this role, she served as a counselor for the “Empower Club”, a safe space where girls develop healthy relationships with their peers. She also taught transition classes for special education adults and senior citizens on specific health topics. She also assisted in program management and administration.
At this agency, Jordanne developed a health communication campaign, and collected and analyzed data from client surveys, utilizing the information for program improvement.
She also served in increasingly responsible roles within healthcare environments, acquiring skills in interfacing with patients and in record keeping.
Her experience as a Lab Assistant provided her with valuable experience researching valid and reliable measurement of methods for biomarkers that indicate stress within the human body. She assisted with gene annotations/sequencing of an isolated SEA-PHAGE.
Jordanne is certified in CPR, and has volunteered in a number of settings, including working with children and assisting in a food pantry and soup kitchen, providing her with people skills within diverse settings.
Jordanne will graduate in May 2020, with an undergraduate degree in Public Health, with a concentration in Community Health Educati
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 Director of The Life Raft Group. In her role as Administrative Director, she is charged with the overall maintenance of the Executive Director’s calendar, including managing the schedule of organizational meetings, travel arrangements and conference calls.
Her research and analysis skills are utilized daily, as she contributes to projects involving the investigation and research of topics as requested by the Executive Director. Allison maintains the monthly reports from department heads, and works closely with both the Senior Vice President and the Finance Director. She maintains ongoing contact with the Board of Directors, as well as with important contacts.
Ms. Russo held increasingly responsible positions in the world of Finance and Investment. As Assistant Vice President for a major hedge fund, she managed a portfolio of hedge funds, performing due diligence and formulating in-depth analysis on all hedge fund relationships. She maintained ongoing communication and conducted meetings with hedge fund clients and investors in order to monitor and convey recommendations to all interested parties. As an Investment Support Supervisor for a multi-billion dollar fund of hedge funds, she managed a team, providing comprehensive investment support and research. She has also served in the role of Legal Assistant.
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.
Maeven brings a wealth of experience in data science to the Life Raft Group. Her diverse experiences in data gathering and analysis add to the knowledge base of the Patient Registry Department.
She is engaged in conducting data and statistical analysis of patient and treatment information, using R and Microsoft Excel, to deliver relevant supports to research in patient treatments.
As an intergral part of the LRG’s internal research team, she present research findings to other team members and third-party groups, and assists with editing and writing research papers.
In her role as Patient Registry Associate, Maeveni s 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.
In addition to her data analysis skills, Maeven has conducted high-level research in the field of acoustics, contributing to her knowledge of research methods and scientific paradigms. She conducted a study based around the JMU Concert Hall space which can be acoustically tuned. This included recording solo instruments as the room moved from fully damped to fully open., and an analysis of how the room can be tuned to optimize the qualities of the instruments.
Maeven holds a Bachelor of Science degree in Physics with minors in Theater and Math from James Madison University.
Carolyn Tordella, BA, Assistant Director of Communications
Carol brings over twenty years’ experience in graphic design, writing, and marketing to The Life Raft Group and is currently the Assistant 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.
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.
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.