Speakers

All webinars are hosted by Jerry Walter and Casey McKenna from the National Fabry Disease Foundation. Speakers are listed in order of their presentation dates.

Jerry Walter, MS

Jerry Walter is the Founder and President of the National Fabry Disease Foundation (NFDF). Jerry manages a diverse set of programs to support the Fabry disease community with two major focus areas. The first is to provide education, support and assistance to people who know they have Fabry disease. The second is to provide education and awareness to increase recognition and diagnosis of people who do not yet know the cause of their Fabry-related illnesses.

As a retired Army Colonel with more than 27 years of active duty military service, Jerry applies his education and experience in nationwide program management, personnel management, strategic planning, operations research, and financial management to managing the NFDF.

Jerry’s interest in providing support to the Fabry disease community stems from his personal experience with Fabry disease. Jerry has Fabry disease himself along with 23 other immediate and extended family members including five family members who passed away between the ages of 37 and 51 due to Fabry disease.

Jerry believes serving the Fabry community is what he was meant to do. After all, in addition to surviving Fabry disease as a 70-year-old male with classic disease, Jerry survived two life threatening bacterial infections, Guillain-Barre Syndrome, and the September 11, 2001 attack on the Pentagon where he was working.

Jerry was born and raised in Michigan. He has a bachelor’s degree in Environmental and Natural Resource Policy from Michigan State University, a Master’s degree in Administration from Central Michigan University, and a certificate in nonprofit management from Duke University. He currently lives in Hillsborough, NC with his wife Angela and their dog.

Casey McKenna, MS, CGC

Casey McKenna joined the National Fabry Disease Foundation (NFDF) in June 2023 as the Senior Program Manager for Fabry disease education, awareness, and community support programs. She first learned about Fabry disease at Mount Sinai School of Medicine where she graduated with a MS in Genetic Counseling in 2013. She started her career at the University of Virginia as a pediatric genetic counselor and coordinator for the lysosomal storage disorder program where she worked within a team to manage the treatment of children and adults with Fabry disease among other lysosomal storage disorders. She is currently taking Master’s classes in Non-Profit Studies at the University of Richmond to better serve the NFDF vision.

Casey has a strong history of volunteerism and working with families affected by rare diseases. As a graduate student, she volunteered at Camp Sunshine’s Fanconi Anemia family camp and conference. In college, she both worked and volunteered at Double H Ranch, a camp for children with severe health conditions. She is also a longtime volunteer with the Virginia Association of Genetic Counselors. She is delighted that her role with the NFDF includes planning and attending the Fabry family conference and camp with Jerry each year!

Lisa Berry, MS, CGC

Lisa Berry is a genetic counselor with the Rare Genetic Disease Program at Cincinnati Children’s Hospital. She began to work with individuals and families whose lives have been impacted by lysosomal storage disorders, including Fabry disease, in 2008. In addition to providing genetic counseling for families, she is on the Ohio Newborn Screening Advisory Council, the Board of Directors for the National MPS Society and has volunteered at the NFDF’s Family Conference and Camp for many years.

Nicolas Abreu, MD

Dr. Nicolas Abreu received his BS from Yale College and MD from Harvard Medical School. He then trained in pediatrics at NYU Grossman School of Medicine and neurodevelopmental disabilities at Boston Children’s Hospital/Harvard Medical School. He received his fellowship training in gene therapy at Nationwide Children’s Hospital in Columbus, Ohio.

Dr. Abreu is an Assistant Professor of Neurology at NYU Grossman School of Medicine in New York City. He serves as the Director of the vibrant NYU Lysosomal Storage Disorders Program, providing comprehensive care to children and adults living with lysosomal disorders, including Fabry disease. He also serves as the Associate Director of the Division of Neurogenetics.

His research portfolio spans natural history studies, registries, outcome measures, and biomarker development, as well as precision therapy clinical trials in neurogenetic and lysosomal disorders. He currently serves on the Patient Outreach Committee for the American Society of Gene & Cell Therapy and the Scientific Advisory Board for the TANGO2 Research Foundation.

John Jefferies, MD, MBA, MPH

Dr. John Jefferies is an internationally recognized cardiologist specializing in cardiomyopathies, heart failure, genetics, heritable disease, artificial intelligence, and rare diseases. He is a Professor in the School of Public Health at the University of Memphis. He is also the immediate past Governor of the Tennessee Chapter of the American College of Cardiology and the immediate President of the American Heart Association Mid-South region. He is a Research Member of St Jude Children’s Research Hospital in Memphis, Tennessee. He completed his combined pediatric and adult cardiology training at the Baylor College of Medicine in Houston, Texas at the Texas Children’s Hospital, and the Texas Heart Institute. He is the lead Editor of two leading textbooks in cardiology and has authored or co-authored over 300 peer-reviewed manuscripts and book chapters. His research is funded by sources including the National Institutes of Health (NIH) and multiple industry partners. He received his MPH from the University of Kentucky with a major in Epidemiology. He received his MBA from the Wharton Business School of the University of Pennsylvania with a dual major in Management and Entrepreneurship & Innovation. He is actively involved in the advancement of innovative technologies, including artificial intelligence in healthcare, novel strategies for healthcare provision connectivity, precision medicine, diagnosis and management of rare diseases, and patient advocacy. He has served as a Key Opinion Leader for over 30 national and international companies. He has served on multiple Scientific Advisory Boards and is a consultant to both privately held and publicly traded companies. He is the Chief Medical Officer for Daxor Corporation. He is the team cardiologist for the Memphis Grizzlies.

Uma Ramaswami, MD

Dr. Uma Ramaswami is a consultant in inherited metabolic disorders, clinical lead for the lysosomal disorders unit at the Royal Free Hospital and honorary associate professor at genetics and genomics medicine, University College London. She leads the Royal Free Hospital lysosomal disorders transition service from paediatrics to adults. Uma has twenty years of experience in managing children and young adults with inherited metabolic disorders, including lysosomal storage disorders, such as mucopolysaccharidoses, Fabry disease, Gaucher disease, Nieman Pick Diseases, alpha mannosidosis, metachromatic leukodystrophy, mucolipidoses, aspartylglucosaminuria etc. and has a special interest in paediatric familial hypercholesterolaemia.

Dr. Ramaswami's research interests relate to the understanding of the natural history and disease progression of inherited metabolic disorders and development of digital apps for capturing patient reported outcomes. She has been principal investigator for many pivotal paediatric and adult clinical trials for lysosomal disorders, including enzyme replacement, substrate reduction and chaperone therapies and has over 150 publications in metabolic medicine. Uma contributes as a National Institute of Clinical Excellence (NICE) Topic Expert, Communicating Editor for Journal of Inherited Metabolic Disorders (JIMD), teaching faculty and personal tutor for 4th to 6th year medical students at UCL, and an invited speaker at many national and international conferences, including lysosomal patient organisations led conferences.

Claire Zar-Kessler, MD, MPH

Speaker biography coming soon!

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