Amanda Moore became CEO of the the ASF in 2019. Prior to that, she was the Director of Leadership Development, Diversity and Inclusion and Global Strategies at the YMCA of Greater Indianapolis where she worked for over eighteen years. Amanda earned her Masters in Leadership Development as well as a Certificate in Fundraising from the Indiana University School of Philanthropy.

Amanda and her family live in Indianapolis, Indiana. Amanda’s husband, Adam, is a nurse and an amazing artist. In 2015 Amanda and Adam adopted twin boys, Jackson and Baden. Jackson was diagnosed with Angelman syndrome in January of 2017 and since then Amanda has made it her mission to be an advocate for all people with Angelman syndrome.

Dr. Thomas F. Miller is Vice President & Global Head, Acute, Chronic and Pediatric Disease Nucleus in Bayer’s Pharmaceutical Division, a role he assumed earlier this year. He joined Bayer in 2017 to create and effectuate their Pediatric Clinical Development function. In total, Dr. Miller’s career in the life science industry spans more than 27 years, with a primary focus on the development of therapeutics, medical devices and combination products for pediatric and rare disease patients.  Prior to joining Bayer, Dr. Miller served in the capacity of Chief Executive Officer of Therabron Therapeutics, Inc. with oversight of all operational functions for the company (R&D, manufacturing, quality, regulatory affairs, etc.). While at Therabron, he oversaw their clinical program through Phase 2 completion for their lead molecule (orphan pediatric disease) and secured both the Rare Pediatric Disease and Fast Track designations for this program. Prior to Therabron, Dr. Miller served in the capacity of Chief Operating Officer of Discovery Laboratories, Inc. During his tenure, the company successfully secured marketing authorization for their first approved therapeutic, successfully registered their first medical device and advanced multiple rare disease pipeline programs into the clinic. Earlier, Dr. Miller served in operational roles of increasing responsibility at Pfizer, Novartis, BASF Pharma, and Johnson & Johnson. He received his doctorate from the Temple University School of Medicine, his MBA from Fairleigh Dickenson University and his bachelor’s degree from Fairfield University. Dr. Miller has authored several peer-reviewed publications, given numerous presentations at scientific symposia and is an inventor with an issued and licensed patent in the field of pediatric respiratory drug delivery

Mary joined the Foundation for Sarcoidosis Research as the organization's first-ever President and Chief Executive Officer in 2020. As President and CEO, Mary serves as the primary representative and spokesperson for FSR and leads the organization's strategic vision with patient engagement, strategic partnerships, fundraising, advocacy efforts, program direction, and an aggressive communications and research agenda.

Mary brings 35 years of nonprofit leadership and management experience to the role. Prior to joining FSR, she served as Executive Director at The Myositis Association (TMA.) As Executive Director of TMA, McGowan was featured and highlighted as a preeminent rare disease leader by numerous entities including American Autoimmune Related Diseases Association, Global Genes and the National Organization for Rare Diseases for her innovative national campaigns including Women of Color and Myositis and her leading telemedicine initiatives for autoimmune patients during COVID-19.

Prior to her time at TMA, Mary served as CEO of WomenHeart: The National Coalition for Women with Heart Disease.  During her 8 years with WomenHeart, McGowan ensured the organization's long-term growth and sustainability as the leading voice for the 48 million American women living with or at risk of heart disease. McGowan also served as Executive Director of the Allergy & Asthma Network, the leading nonprofit organization dedicated to eliminating suffering and death due to asthma, allergies and related conditions. She held various positions with the American Academy of Pediatrics during her service of 18 years. McGowan earned a Master's Degree in Human Resources Development from the George Washington University and a B.A. from Trinity University.

John G. Geisler, Ph.D., Founder & Chief Scientific Officer, Mitochon Pharmaceuticals, Inc. – Expertise in drug discovery in metabolic disease (Pfizer, Ionis, JnJ) with a primary role bringing forward the inception of new ideas.  By striving to working at the root of problems and years of attempting to partition lipids to restore insulin sensitivity, Dr. Geisler has built an expertise in mitochondrial energy expenditure.  From this work, stemmed a broader understanding of new mitochondrial targeted applications, and significant gaps of pharmacological interventions for insidious movement disorders, neurodegenerative diseases, and trauma.  Dr. Geisler holds a Ph.D. in Mammalian Genetics from University of Tennessee, conducted at Oak Ridge National Laboratories (ORNL), and a dual fellowship at Pfizer & Yale University, focused on the physiology of Type-2 diabetes and whole-body flux.  Mitochon Pharmaceuticals was launched Nov 2014 along with co-founder, Robert Alonso to understand the merits of mitochondrial uncouplers  as a treatment for insidious neurodegenerative diseases by resolving mitochondrial dysfunction common to most, if not all diseases. Our lead compound, MP-101 (2, 4 dinitrophenol), an oral brain penetrant small molecule, completed Phase I in Normal Healthy Volunteers, proving to be safe and well tolerated. Mitochon subsequently started a series of Phase I/IIa 14-day biomarker studies to test the merits of MP-101 to lower damage and increase biogenesis/neurotrophins for repair in sporadic ALS (sALS), Huntington’s, Multiple Sclerosis and Alzheimer’s Disease participants.  Recently, the sALS cohort completed with remarkable results and now Mitochon is gearing up for Phase II in the Fall of 2026.  Our second molecule, a prodrug, MP-201, is focused on glaucoma and Traumatic Brain Injuries (TBI), including both classic TBI, more common in civilian population and repetitive blast TBI, common among military settings.

Healthcare corporate affairs and advocacy leader skilled in building meaningful alliances between multiple stakeholders including nongovernmental organizations, patient advocates, medical and scientific key opinion leaders, policymakers, and academia. US and global experience across the biopharmaceutical product lifecycle, from early-stage research to commercialization, pricing, access, and distribution. Deep experience in patient engagement, advocacy development, coalition-building, and disease awareness. Strong knowledge and understanding of multiple therapeutic areas including rare disease. Passionate about effecting change for people fighting serious disease, communicating complex science through storytelling, problem solving, and fostering patient-centric cross-functioning teams.

Joe is responsible for leading the development strategy and internal R&D efforts for projects within the RTW Foundation portfolio. Prior to joining RTW Foundation, Joe was a staff scientist at Regeneron where he led a team focused on preclinical development of gene therapies and AAV vector engineering. Before Regeneron, Joe was a principal scientist at Pfizer where he developed and led multiple immuno-oncology programs from early-stage discovery up to IND application, working with a diverse array of modalities including lipid/polymeric nanoparticles, PROTACs, ADCs, antibodies, and small molecules. Prior to Pfizer, Joe was a senior scientist at Innovimmune, a biotech startup. During his PhD, Joe developed unique delivery technologies for nucleic acid-based drugs, seeking to modulate immune responses for autoimmune and oncology indications. His PhD work led to two separate first author publications in Molecular Therapy, as well as additional publications throughout his research career.

Joe has a BS in human biology from Michigan State University, a MS in cellular & molecular biology from Eastern Michigan University and a PhD in immunology & biomedical sciences from the Albert Einstein College of Medicine.

Kari has served as President and CEO since November 2007 and previously held progressive leadership positions with the organization since 2001. During her tenure, the TSC Alliance established a comprehensive research platform fostering collaboration with industry and academia to move treatments for TSC forward in a more expedited way. Because of her leadership, the organization has taken an active role in educating the TSC community about clinical trials to diminish the time for recruitment, including pivotal trials that have led to three FDA-approved drugs specifically for TSC. In 2019, the organization launched a Research Business Plan with the goal to change the course of TSC for those living with it today and for generations to come paired with an aggressive fundraising campaign leading to more than $23 million raised. Since joining the TSC Alliance, the organization has grown from a $2.1 million annual operating budget to $10 million and is heralded with top ratings by watchdog organizations. Kari graduated with a BA degree in Theatre from the State University of New York at Albany and upon graduation founded a theatre company with fellow graduates in New York, NY.  After the loss of her first child, Noell, to sudden infant death, she dedicated her career to helping other families.