Norman Scherzer - Executive Director
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 Occhiuzzi, MPA, Senior Vice President
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, MPP, Senior Director, Research
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 Nieves, MPA, Senior Director, Outreach & Engagement
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, MA, Director, Communications
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, 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 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 Montoya, MS, Director, Patient Registry
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.
Jessica Nowak, BA, Director, Outreach & Engagement
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.
Lorraine Ramadan, Director of Finance
Lorraine brings over twenty years’ experience in financial management, both in the nonprofit and for profit sectors to The Life Raft Group.
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.
Lorraine 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. Her knowledge of the financial realm allows her to provide input to Executive Management when devising revenue-enhancing strategies. 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.
Lorraine holds a certificate in Business Administration from Berkeley College, New York.
Jerry Call, Data Analyst
Jerry Call has served for over sixteen years in the GIST Cancer nonprofit environment at The Life Raft Group.
As one of the founding members of The LRG, Jerry has leveraged his desire for scientific knowledge to create a foundation for data analysis that has been helping GIST patients to both survive and thrive.
In his current role as Data Analyst, Jerry utilizes the sophisticated features of our Patient Registry to review and analyze treatment lines, epidemiological data and trends to provide information that is vital to both patients and researchers alike. Of particular interest is the investigation of survival statistics, and performing analysis that will result in providing solid survival strategies for cancer patients.
Additionally, he serves on the Epidemiology Task Force, facilitating investigations by collaborative researchers. He coordinates efforts with the Real World Evidence Team, formulating hypotheses and developing topics for research studies.
In his former role as Science Coordinator, he was responsible for science and related research and education for The Life Raft Group. His ability to research and review the latest literature and translate it into laymen’s terms for patients and caregivers and staff enhances their body of GIST knowledge by presenting it in newsletter articles, web posts, training and presentations.
Jerry served as a member of the strategic planning group for The Life Raft Group GIST resistance research project. Analyzing the mechanisms of resistance is a major focus of his work.
He often serves in the role of liaison between researchers, doctors, pharmaceutical companies and patients, including keeping patients and their doctors informed of available clinical trials. His attention to detail and vast knowledge of GIST, treatment lines, clinical trials and the cancer landscape is enhanced by his personal investment in finding a cure.
Jerry worked in the for profit environment before coming to The Life Raft Group, where his planning and analytical skills were honed in the building and manufacturing environments.
He proudly served in the United States Marine Corps.
Sahibjeet Kaur, BS, Patient Registry Supervisor
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.
Yu Wang, MB, PhD, Real World Data Scientist
Yu Wang brings over sixteen years of clinical and translational medicine experience to The Life Raft Group. He has worked as a PhD researcher at both the VA Medical Center in Mather CA, and the University of Texas Health Science Center at San Antonio, and completed a postdoctoral fellowship at the Cleveland Clinic. These positions involved significant cancer and drug development research projects.
In his role as Data Scientist for The Life Raft Group Real World Evidence Team, Dr. Wang is involved in high-level data analysis and development of platforms that provide real world actionable information to aid in patient survival and quality of life.
While developing SideEQ, The LRG’s online side effects management platform, he manages patient provided PRO and QoL data. As part of the global expansion of data collection, he integrates and standardizes patient registries for Europe, the U.S. and Latin America, providing PRO measurement, analysis and instrument evaluation. Dr. Wang additionally performs data integration for multi-platforms and structured databases as part of the LRGConnect initiative. He provides data query, cleaning and management, as well as data visualization and statistic generation. He utilizes machine learning for patient prognosis prediction, side effects management and therapy design.
Utilizing his medical experience, Dr. Wang analyzes data and information on endocrine-related carcinomas and soft tissue sarcomas, and provides scientific and medical support for sarcoma advocacy.
Dr. Wang holds professional memberships in The American Association for Cancer Research, The American Association of Clinical Oncology and the American Society for Biochemistry and Molecular Biology. He is widely published.
Camille Charles, BS, Patient Registry Associate
Camille brings a wealth of experience in clinical research, statistical analysis, direct patient interactions and patient education to The Life Raft Group.
As a Patient Registry Associate, she is part of a team of patient monitoring coordinators and data analysts who provide day-to-day support of LRG patients.
Providing direct patient contact including outreach, medical updates, email community support and patient education, she draws upon both her medical knowledge related to GIST, but also her ability to research pertinent information to empower the patient to participate in their own care.
Prior to coming to The Life Raft Group, Ms. Charles worked at the Women’s Health Institute at Robert Johnson Medical School as a Clinical Research Assistant, where she conducted statistical analysis on clinical research data and assisted with IRB submissions of various protocols and clinical trials. For Rutgers University Health Services, Ms. Charles was a Sexual Health & Alcohol and Drugs Peer Educator. She conducted HIV testing of students on campus under the supervision of staff personnel, and provided information and tools to groups of students about drugs, alcohol and sexual health. As a Research Intern Assistant at New York University Center for Health, Identity, Behavior and Prevention Studies, she assisted in research studies and worked in community outreach to recruit participants. She supported the research team through literature review, data compilation and transcribing.
Ms. Charles holds a B.S. with a double major in Public Health/French Literacy Studies and a Certificate in Public Health/Advocacy Education.
Angela Edson, BA, Office Manager
Angela brings experience in both healthcare and education to The Life Raft Group. In her role as Office Manager her attention to detail and ability to provide excellent customer service, both internal and external, make her an asset to The LRG team. Her experience in both sociology and education enable her to relate to our patient community in both a sensitive and confidential fashion, and to assist them with their requests. With an innate empathy for cancer patients and caregivers, she responds to individuals in a timely and compassionate manner.
Her experience gained in her internship placements for her Master of Social Work degree at The Valley Hospital, Mount Sinai Comprehensive Cancer Care Center and at the Christian Health Care Center have provided her with counseling skills, enabling her to provide insight to staff members and to share resources with our patient and caregivers.
Angela’s flexibility helps her in supporting LRG departmental requests within an often fast-paced environment. She utilizes her knowledge of general office tasks and computer applications to assure that projects are completed in a timely manner. No task is too complex or too mundane for her to tackle, approaching each challenge with a patient and cheerful approach.
Angela holds a Bachelor’s degree in Sociology from Ramapo College and is pursuing a Master’s Degree in Social Work at the same institution
Jennily Eshak, BS, Patient Registry Associate
Jennily brings a wide range of experience in healthcare and research to The Life Raft Group.
In her role as Patient Registry Associate, Jennily is part of a team of patient monitoring coordinators and data analysts in their 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 educating and assuring the patients.
Before coming to the LRG, Ms. Eshak participated in a research lab project at Rutgers University, working with a psychology professor and specialized researcher, raising awareness about the loss of self-control as it relates to drug use. As an intern at Robert Wood Johnson University Hospital, she worked on the support and creation of a database for victims and survivors of human trafficking, gathering resources. She created educational material to inform the public about sex trafficking and HIV/STD risks.
Jennily 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.
Helena Mattioli, Project Coordinator
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 is currently pursuing a Bachelor of Arts degree in Secondary Education and English at Ramapo College.
Merilyn Marmora, AA, Outreach & Engagement Associate
Merilyn brings extensive experience in education, psychology, counseling and early childhood development to The Life Raft Group. Her communication skills and ability to clearly convey key messaging is invaluable when dealing with all LRG stakeholders, from patients and caregivers to the community at large.
As an Outreach and Engagement Associate, Merilyn is involved in the day-to-day communication with our membership, including following up with new members and documenting information in our database. Actively involved in the planning and execution of key LRG events, she is part of a team, working on projects such as our GIST Days of Learning (GDOLs) and fundraising activities like our GIST DO IT Walks.
She has worked extensively in counseling children and students, aiding in the development of skills to aid in their intellectual and interpersonal growth. This experience supports her ability to be empathetic to our patients and caregivers.
Fluent in Spanish and proficient in Portuguese, she is able to assist in helping our global population.
Merilyn holds an Associate Degree from Essex County College in Early Childhood Education, and will receive her Bachelor of Arts Degree in Family Science and Human Development from Montclair State University in 2019.
Allison Russo, BS, Executive Assistant
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 Executive Assistant, 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.
Carolyn Tordella, BA, Web & Graphic Design Associate
Carol brings over twenty years’ experience in graphic design, writing, and marketing to The Life Raft Group.
In her role as Web and Design Associate, Carol is charged with designing and creating copy for The LRG website, as well as the LRG Newsletter. Carol also aids in designing and creating marketing materials and other projects as necessary for aiding in the branding of The LRG. She is a skilled interviewer, interacting effectively with patients, caregivers and medical professionals in creating content for the web and publications. 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.
Piga Fernández, Global Relations Consultant
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.
Kathleen Gronet, Certified Grants Specialist, Grants Consultant
Kathleen Gronet brings over 30 years experience in grant procurement, grant management, program development and implementation, clinical operations, staffing, quality improvement, community partnerships and fiscal performance within a healthcare setting to the Life Raft Group.
As Grants Consultant, Kathleen works closely with the LRG staff to identify grant opportunities to support the Life Raft Group’s Research and Programs. Utilizing her in-depth knowledge of both LRG needs and capacity for successfully implementing programs, she is able to write and obtain appropriate grants to aid in our mission.
Kathleen manages her own consulting firm. Prior to this, she held the position of Administrative Director of the Behavioral Health Centers of Saint Clare’s Hospital. She holds a Bachelor of Science Degree in Psychology from Springfield College in Massachusetts, and a Master of Arts in Rehabilitation Counseling from New York University in New York NY.
She holds certifications as a Certified Grants Specialist from the National Grant Writers Association, University of South Carolina, Columbia, SC and a Certificate in Public Management from The Public Administration Institute at Fairleigh Dickinson University, Madison, NJ.
James Lee, BE Eng., IT Consultant
James Lee is an accomplished Information technology professional with over twenty years of experience in business and technology systems, data integration and the architecture, design and development of platforms.
As a consultant for the Life Raft Group, James has developed infrastructure for several key data projects, including rewriting the existing Patient Registry database online that allows patients, researchers and local administrators to access patient medical records, track their tissue samples, and run statistics and reports.
James developed GIST/PRIME, a custom-built, global, interactive patient-powered monitoring and management tool that patients can use to enter, updated and interact with their health data.
He is currently working on a Data Integration Portal which will provide a single registration and sign-on access to various LRG platforms
A thought leader, James has a strong track record in application delivery, a sloid foundation in problem solving, a pure passion for development, and a natural curiosity for exploring technology and understanding business lines.
Prior to consulting for the Life Raft Group, James worked in private industry on a number of architecture, design and development projects of base framework for key applications. He served as a Sr. Programmer Analyst for a major Financial corporation and as a Web Application Developer for AT&T.
He holds a Bachelor of Engineering in Computer Engineering from Stevens Institute of Technology.