Exon 20 Group Leadership
Kevin M. Hanlon
Chairman and Co-Founder
—of cherished memory—
Kevin Hanlon was President and CEO of ComSource, Inc., a technology systems integrator he co-founded in 1989 headquartered outside of Syracuse, New York. ComSource worked with many Global 500 companies supplying high performance technology infrastructure for enterprise data centers throughout central and eastern United States. Kevin earned a B.S. in Marketing and Business Administration from The University of Vermont and a Master’s in Business Administration from Syracuse University.
He is survived by his wife Denise and three children; Lilly, Mark and Ellrose. A lifetime runner, cyclist and triathlete, he competed in two Boston Marathons to benefit the Dana-Farber Cancer Institute and will be competing as a cyclist in the upcoming Dana-Farber Pan Mass Challenge.
Kevin was also an Eagle Scout and enthusiastically involved in Boy Scout leadership. His son Mark, is also working towards that achievement. Kevin and his family have been active members of Immaculate Conception Church for 52 years.
Kevin never smoked and his NSCLC EGFR exon 20 insertion diagnosis came as a shock. He and his brother Bob, founded the Exon 20 Group to shine a spotlight on, and accelerate the discovery and rapid approval of promising exon 20 targeted agents to the benefit of current and future NSCLC EGFR and HER2 exon 20 patients.
Robert T. Hanlon, PhD
Chairman and Co-Founder
Robert Hanlon, PhD, is a Senior Lecturer in MIT’s Department of Chemical Engineering and is responsible for helping operate the School of Chemical Engineering Practice at locations around the globe. Prior to this, he had spent 23 years in industry, first with Mobil Oil Corporation where he was involved in the research and development of new catalyst technology, culminating in the 1997 commercialization of an all-catalytic lube oil process at Mobil’s oil refinery in Singapore.
Marcia K. Horn, JD
Executive Director
Since March 2017, Marcia Horn, JD, has served as the Executive Director of the Exon 20 Group/Exon 20 Warriors (https://exon20group.org) and has built the organization into an international multi-stakeholder coalition and advocacy powerhouse with the mission of transforming cancers caused by EGFR exon 20 insertion and HER2 exon 20 insertion mutations into manageable diseases.
The Exon 20 Group, founded by the late Kevin M. Hanlon and Robert T. Hanlon, PhD, provides direct patient navigation and oncology nursing services and a variety of services to EGFR exon 20 and HER2 exon 20 patients and care partners. In 2021, ICAN Board of Trustees chair Sherry Weinstein, Exon 20 Group chair Bob Hanlon, and Marcia launched ICAN's International Research Consortium which has become the epicenter of exon 20 research funding and transformative research projects.
Every new member of the Exon 20 Group is personally onboarded by Marcia or a member of her advocacy team. The organization is known for its hands-on customized patient advocacy services at each pivot point of the patient's exon 20 journey.
Marcia is also the president and CEO of ICAN, International Cancer Advocacy Network, https://askican.org, a 501(c)(3) charitable organization focused on direct patient navigation and customized information services for State IV cancer patients. ICAN's ethos is unapologetic, creative, and tenacious patient navigation and advocacy, with the mission to extend life with the highest attainable quality of life.
At ICAN, Marcia is a research advocate who has directly navigated many thousands of complex cancer patient cases since the founding of the organization in 1996. She is also a molecular profiling advocate, a clinical trials matching advocate, an expanded access program ("compassionate use") advocate, a public policy advocate, and a health equity advocate.
Marcia has served as one of two research advocates for both the Stand Up 2 Cancer Molecular Early Detection of Colon Cancer Dream Team and the Stand Up 2 Cancer InTIME Dream Team for Lung Cancer Interception. She served for three years as DIA's inaugural chair of its Patient Engagement Community and remains a PCORI (Patient-Centered Outcomes Research Institute) Ambassador. Marcia has served seven years as a member of the ASCO TAPUR Study Molecular Tumor Board, ten years as a member of the Banner Health Institutional Review Board, and seven years as the research advocate for the SWOG Early Therapeutics/Rare Cancers Committee. Since 2017, Marcia has enjoyed being one of the research advocates for The University of Texas Southwestern/MD Anderson Cancer Center Lung SPORE (Specialized Programs in Research Excellence).
In January 2024, Marcia was selected as the research advocate for the International Association for the Study of Lung Cancer (IASLC) Rare Tumors Committee and is a co-lead for a major project of the Small Cell Lung Cancer Committee. Marcia has been proud to represent the Exon 20 Group as a member of the patient advisory board for 23andMe's transformative Lung Cancer Genetics Study which was launched in July 2024.
Since 2013, Marcia has reviewed clinical trial protocols, informed consent forms, and patient collateral materials for pharmaceutical and biotech companies as well as nonprofit foundations. Receiving shoutouts at cancer conferences for her expertise in and success at clinical trials accrual and retention, Marcia is continually asked to refer patients and care partners for speaking engagements and patient-centered advisory boards.
ICAN has consistently been rated as Top Rated Health Care Nonprofit/Top Rated Cancer Nonprofit since the inception of that award at GreatNonprofits.org. Marcia is currently serving her second term on Charity Navigator's Consultative Council for Nonprofit Leaders. She was a member of GuideStar's advisory board for the planning of GuideStar's rollout of its Platinum rating. She is known for her collaborative spirit and her generosity in mentoring CEOs in other nonprofit organizations since half of her nonprofit career was involved in chairing boards and half has been involved in executive leadership.
Marcia credits the success of the Exon 20 Group to all the patients and families we have worked with and are working with; the tremendously talented and accessible principal investigators of the exon 20 trials we refer patients to; the scores of thoracic oncologists and community oncologists who have become experts in exon 20 over the past 8 years; our truly responsive pharma and biotech partners in medical affairs and clinical operations; the molecular profiling companies who share our passion to identify every exon 20 patient; our professional council members; and of course our wonderful Exon 20 Group staff and numerous volunteers.
The Exon 20 Group's ambitious research agenda is chiefly made possible by generous donors and philanthropists, including members of the Syracuse-based Exon 20 Advisory Board under Bob Hanlon's and Michael Beacham's leadership; Memorial and Tribute programs named by patient families in honor of or in memory of patients we have worked with for years; and the many patients and care partners involved in our satellites and working groups outside the United States.
Marcia graduated Phi Beta Kappa from Stanford University in Political Science and received her JD from Stanford Law School. Before joining ICAN, she practiced commercial litigation and appellate law in Phoenix and held major leadership roles in the arts and civic organizations in Arizona.
Marcia resides in Phoenix and enjoys ballet and opera. Her son, Yoni Horn, is a graduate of ASU's Barrett Honors College and Pepperdine Law School. He practices corporate law in Santa Monica.
Carmi Fazio, RN MSN ONS
Director of Oncology Nursing
Carmi Fazio, RN MSN ONS, is a registered nurse currently living and working in Niles, Illinois. Her areas of expertise are in oncology and end of life nursing. As an RN, she has worked in oncology since 2006. She received her Associate degree in 2005, her Bachelor's degree in 2012 and a Masters in Nursing Education in 2016. She graduated as a member of the prestigious Golden Key International Honor Society.
Carmi has received many accolades for her work in oncology including Cure Magazine's Extraordinary Healer Award in 2016, OptumCare/United Health Group (UHG) Superhero Award in 2018, a 2018 worldwide leader in healthcare from the International Nursing Association, and the Diamond Award for top professional in oncology nursing for outstanding achievements as a nurse and a cancer care specialist in 2018. She has completed interviews for the Oncology Nursing Society on a variety of oncology issues. She has appeared in CURE Magazine and Fra Noi (an Italian publication) for her achievements in oncology nursing. As Chair of the Oncology Nursing Council at ICAN, she co-authored a presentation for the 46th Annual Congress of Oncology in 2021 titled "Improving Patient Understanding of Testing in Precision Medicine with Consistent, Plain Language Testing Terms."
Carmi works with patients at ICAN who seek counseling for symptom management, side effects, and pain management. When she isn't working, Carmi likes to read and spend time with her siblings, mom, dogs, and friends.
Kristen Leniz
Senior Patient Advocate
Kristen Leniz, Senior Patient Advocate at ICAN, is a Board-Certified Health Coach with over 10 years of experience in the health and wellness industry. In addition to her work at ICAN, International Cancer Advocacy Network, and its support groups, she serves as a Behavioral Health Coach at Omada Health where she specializes in behavior change, diabetes prevention and management, hypertension, and nutrition. Kristen holds a Bachelor of Science in Marketing from the University of South Florida. Her advocacy work began in 2018 when her mother, Stella Martinson, was diagnosed with the rare EGFR Exon 20 mutation. In honor of her late mother, Kristen continues to support patients through her involvement with the Exon 20 Group at ICAN. She resides in Lakeland, Florida, with her fiancé Johnny Knotts and daughter Jayde.