Our Team

Terry has been active in the KDA for several years, supporting his wife and fellow Board member, Kathy. He is passionate about finding treatments and a cure for KD, a disease that directly affects his family.

Terry completed a 45-year professional career that included 30 years of government service, starting with three years on active duty as an officer in the U.S. Marine Corps. He retired as a Senior Executive from National Security Agency and joined Booz Allen Hamilton where he rose to the position of Vice President. He now teaches graduate courses in cybersecurity at the Johns Hopkins University. He has a BA and MA from Wayne State University in Detroit, Michigan, and a PhD from Georgetown University. Terry is an avid golfer and has participated in the KD Golf Scramble in Magnolia, Texas. He enjoys other outdoor activities with Kathy, from walks around their neighborhood to hikes in the nearby Maryland mountains.

Jameson first learned of KD after his older cousin had endured years of testing and uncertainty before receiving this rare diagnosis. Within a few years, in his early 30s, Jameson began to experience the symptoms of KD and received his own diagnosis. Soon after this he attended his first KD conference. His eyes were opened as many of the men with this diagnosis still lived active and fruitful lives.

Jameson has four children and is joyfully married to his sweetheart Heidi. He is involved in his church, enjoys competitive chess and loves to travel and spend time with his extended family. With 10 years in scientific research and development in industries such as space science and alternative energies, Jameson left his engineering career to embrace his calling as an educator. Jameson currently works as a high school physics teacher in an urban district in Connecticut. He has a B.S. in Physics, an M.S. in Education and is involved in multiple leadership positions within his school district.

David Yelton was diagnosed with KD in 2009 and retired in 2011 when his job was relocated to another state. He had begun to positvely adapt to life with KD and did not want to restart the neccessary education process with an entirely new set of medical professionals.

The KD diagnosis was the answer to a very pressing question, why did David feel trapped in a worn-out body? The neurologist encouraged him to research KD, learn all he could so that he could then help David deal with the condition. The neurologist's ability to quickly find the correct diagnosis for David was aided by the KDA's early efforts to educate all neurologists about KD symptoms. David is still his only KD patient. What a blessing it was to find the KDA website. Some questions were answered quickly and others took time and effort but all have helped him take some control over life with KD. This is why he decided to serve on the KD board. Others have given so much hope and direction to him that he feels it is only appropriate to help make sure that this organization continues to grow and prosper.

Since his diagnosis, the family has learned why David's maternal grandfather lived so long with ALS; Grandpa Joe never really knew what put him in a wheelchair. Subsequent to David's diagnosis other tests show that one of his nephews, a first cousin and two of his mother's first cousins all have KD This truly shows that KD is a family affair.

Kathy became an active member of the KDA in 2010 when she volunteered to help plan the conference in San Diego that year. A mother of two sons, she had a brother and at least one cousin who were victims of the disease.

A native of Pennsylvania, Kathy has a BA from the University of Pittsburgh and a master’s degree from the University of Toronto. During a 40-year career with the federal government, she worked as an intelligence analyst and executive manager as well as an instructor at the National Cryptologic School. She resides in Maryland with her husband, Terry, with whom she enjoys hiking, traveling, skiing, and taking advantage of a variety of cultural events and activities in music, art, dance, and cinema – a major advantage of living in the Baltimore-Washington area. She studies piano, takes literature classes at Johns Hopkins University and is a voracious reader of contemporary literature. In addition to fiction, books on molecular biology and medical research now occupy the space on her nightstand.

As a Board member, she is committed to finding a cure for Kennedy’s Disease and extremely grateful to the founders of the organization as well as the dedicated cadre of doctors, researchers and staff at NIH and labs across the country who are leading the effort.

Born in England, Simon later lived in Bermuda and moved to California in 1994. Prior to that, he apprenticed in Aeronautical Engineering, obtaining a BSc in Mechanical Engineering at the University of Bath. In 1974, he became an Engineer Officer at sea, attaining with time, his Chief Engineer’s Certificate of Competency. This led him to pursue a career as a Ship Surveyor and Safety Management Auditor of all types of ships throughout the world. In 1997, his older brother Patrick was diagnosed with KD. This explained the symptoms Simon had been experiencing since his forties. Fortunately for Simon, having been a keen cyclist since he was a teenager, the effects of KD were gradual and did not fully prevent him from enjoying his bicycle, or safely handling the physical side of his work, until he was about sixty. He retired at age sixty-five, and lives with his wife Denise in San Diego.

After years of displaying Kennedy’s Disease related symptoms and looking for a diagnosis, Ronald was diagnosed in 2011 with Kennedy’s Disease at the University of Illinois, Chicago Department of Neurology. Ronald calls Arkansas home. His interests include computer activities, volunteering, reading, watching professional and collegiate sports - "Go-Hogs".

Steve was diagnosed with KD in 2017 and attended his first KDA conference later that year. He was fortunate to have been diagnosed by a neurologist who was aware of the rare disease and its onset symptoms. Steve has found the KDA to be an invaluable resource in learning as much as he can about the disease and the pursuit of a cure. He encourages all those afflicted with KD to attend the annual conference so that they too can feel that they are not alone in adjusting to the realities of living long, productive and active lives with KD. Steve has also visited and been inspired by the NIH and their dedicated doctors, nurses, therapists and researchers who study and treat KD patients. The NIH serves as a tremendous source of knowledge about the disease, the ongoing research to find viable treatments and developing helpful ways to live productively with the disease.

Steve was born and raised in New York City and still calls the Big Apple his home. He has been married to Jen for over twenty years and they have two college aged children. Steve continues to exercise regularly and enjoys taking long walks in Central Park with Jen. He also loves to fly fish. Steve is an avid sports fan and loves rooting for the New York Rangers.

Steve is a founding member of a small boutique law firm in New York specializing in commercial litigation with an emphasis on surety and construction law. He continues to actively practice law in state and federal courts throughout New York. Steve is a proud graduate of Brown University and St. John’s University School of Law.

Dale Traxler- In 2011, after 15 years of symptoms and misdiagnosis, a neurologist at Wake Forest Baptist Hospital accurately diagnosed my condition as Kennedy’s Disease. Although, a relief to know the name of the disease, I needed to know the next step to manage Kennedy’s Disease in my life. The Kennedy’s Disease Association has been a blessing to myself and my family. Through the information on the website, conferences, and contact with researchers at the NIH I have been able to gain much knowledge and information concerning Kennedy’s Disease.

Dale was born in Ohio in 1959 and lived there until 1980, when he married his high school sweetheart. That year Dale and his wife moved to North Carolina to raise a family, and they continue to reside there today. Dale cherishes his 3 grown children, and their mates, along with 8 precious grandchildren. Dale spends all the time he can with his children, grandchildren, and wife Kathy.
Dale started Private Label Manufacturing Inc. in 1985. PLM is a for-profit soap and supply company. He ran it until 2016 when his son and wife took over daily operations so he could retire and participate in the NIH drug study for 4 months. He also established a non-profit organization New Beginnings, to help those that are homeless and to partner with other disaster relief organizations.
Currently, Dale serves in his local church as a board member. In years past he served in the church mentoring young people as a leader in the youth group, taught Sunday school, and coaching. He also serves on the Carolina University board in Winston-Salem North Carolina. He also served several times on the Winston Salem Rescue Mission board.

Dale is excited to serve on the Kennedy’s Disease Association Board. He looks forward to helping find a cure for future generations, better treatments, and quality of life for those currently affected by this debilitating disease.

Chair University of Michigan Medical School

Dr. Lieberman is the Gerald D. Abrams Professor in the Department of Pathology and Director of Neuropathology at the University of Michigan. Dr. Lieberman received his BS from Duke University and his MD, PhD from the University of Maryland Medical School. He completed residency training in Anatomic Pathology and fellowship training in Neuropathology at the University of Pennsylvania. He trained as a research fellow with Dr. Kenneth Fischbeck at the Neurogenetics Branch NINDS, NIH, and then joined the University of Michigan Medical School faculty in 2001. Dr. Lieberman’s research has focused on the mechanism of neurodegeneration in inherited neurological disorders. His laboratory uses cell culture and mouse models to explore the pathogenesis of Kennedy’s disease and Niemann-Pick C, a lysosomal storage disease resulting from impaired lipid trafficking.

Chair Emertus National Institute of Health

Dr. Fischbeck is a Distinguished Investigator working in the Neurogenetics Branch of NIH. The purpose of the Neurogenetics Branch is to investigate the causes of hereditary neurological diseases, with the goal of developing effective treatments for these disorders. Particular areas of research interest in the Fischbeck lab have included Kennedy's disease and other polyglutamine expansion diseases, spinal muscular atrophy, Charcot-Marie-Tooth disease, muscular dystrophy, and other hereditary motor neuron diseases. A genetic outreach program is intended to identify and characterize patients and families with hereditary neurological diseases. The disease mechanisms are studied and potential treatments are evaluated in cell culture and other model systems. Clinical trials have been done for Duchenne muscular dystrophy and Friedreich's ataxia as well as Kennedy's disease. Efforts are currently underway to develop new clinical and quality of life measures for Kennedy’s disease therapeutic trials. Dr. Fischbeck received A.B. and A.M. degrees from Harvard University and an M.D. degree from Johns Hopkins. After a medical internship at Case Western Reserve University and a neurology residency at the University of California in San Francisco, he did postdoctoral research on muscular dystrophy at the University of Pennsylvania. In 1982 he joined the faculty in the Neurology Department at the University of Pennsylvania Medical School, and in 1998 he joined NIH as Chief of the Neurogenetics Branch. Dr. Fischbeck received the Cotzias Award from the American Academy of Neurology and the Jacoby Award from the American Neurological Association, and he was elected to the National Academy of Medicine.

University of California, Irvine

Dr. La Spada is a Distinguished Professor and Director of the UCI Institute of Neurotherapeutics, which he founded. He is also Associate Dean for Research in the School of Medicine. Dr. La Spada graduated Summa Cum Laude from the University of Pennsylvania with a degree in Biology in 1986. While a M.D. - Ph.D. student at the University of Pennsylvania School of Medicine, he identified the cause of X-linked spinal & bulbar muscular atrophy (SBMA) as an expansion of a trinucleotide repeat in the androgen receptor gene. As the first disorder shown to be caused by an expanded repeat tract, this discovery of a novel type of genetic mutation led to the emergence of a new field of study. After completing training as a Clinical Genetics fellow and a Howard Hughes Medical Institute Physician Postdoctoral Fellow, Dr. La Spada joined the faculty at the University of Washington Medical Center in 1998, and became a Professor of Laboratory Medicine, Medicine (Medical Genetics), Pathology, and Neurology (Neurogenetics). In 2009, he was appointed Professor and Division Head of Genetics in Pediatrics, Cellular & Molecular Medicine, and Neurosciences at the University of California, San Diego, and was a founding faculty member and Associate Director of the UCSD Institute for Genomic Medicine. Dr. La Spada then moved to North Carolina where he became the founding Director of the Duke Center for Neurodegeneration & Neurotherapeutics and served as Distinguished Professor of Neurology, Neurobiology, and Cell Biology, holding the Lincoln Financial Endowed Chair at the Duke University School of Medicine. In 2020, he joined the faculty of the University of California Irvine as Distinguished Professor of Pathology & Laboratory Medicine and Neurology.

Thomas Jefferson University

Dr. Merry is a Professor in the Department of Biochemistry and Molecular Biology and Vice Chair, Faculty Development and Engagement at Thomas Jefferson University in Philadelphia. She is also a member of Jefferson’s Vickie & Jack Farber Institute for Neuroscience and Chair of its Scientific Advisory Board. Dr. Merry’s research uses novel cell and mouse models to understand the molecular pathogenesis of SBMA, first, by determining the role of AR structural and functional domains in DHT-dependent AR misfolding, aggregation, and toxicity and second, by determining pathogenic mechanisms through the identification of altered AR protein-protein interactions. These studies are designed to understand how motor neurons and muscle cells respond to the accumulation of misfolded AR protein and to identify therapeutic opportunities in SBMA. Dr. Merry organized and chaired the first-ever international SBMA research conference in 2021.

University College, London (UCL)

Professor Pietro Fratta is an MRC senior clinical fellow and MNDA Lady Edith Wolfson fellow at the UCL Queen Square Institute of Neurology and honorary consultant neurologist at the National Hospital for Neurology and Neurosurgery in London, United Kingdom. His research focuses on molecular mechanisms and biomarkers of motor neuron disease (MND) and Kennedy’s disease, also known as spinal bulbar muscular atrophy (SBMA). His clinical activity is within the MND group at NHNN. He has a specific interest in MND genetics and Kennedy’s disease and runs an MND Genetics clinic and a Kennedy’s disease clinic, the only dedicated clinic to this disease in the UK. He obtained his PhD at the UCL Institute of Neurology working on models of motor neuron disease. He previously trained in Neurology with a focus on neuromuscular disorders, at the University of Milan and at the University of Southern California (USC).

John Hopkins University School of Medicine

Dr. Sumner is a Professor of Neurology and Neuroscience at Johns Hopkins University School of Medicine. She received her B.A. from Princeton University and M.D. from the University of Pennsylvania. She completed internal medicine internship and neurology residency at the University of California San Francisco and further clinical and scientific fellowship training at Johns Hopkins and the National Institutes of Health (National Institute of Neurological Disorders and Stroke). Dr. Sumner cares for patients with genetically-mediated neuromuscular diseases and co-directs the Johns Hopkins Muscular Dystrophy Association Care Center, the Spinal Muscular Atrophy (SMA), and the Charcot-Marie-Tooth (CMT) clinics, which deliver multidisciplinary clinical care, engage in international natural history studies, and provide cutting edge therapeutics. Dr. Sumner’s laboratory research focuses on the genetic and cellular pathogenesis of motor neuron and peripheral nerve disorders with particular attention to identification of disease genes, characterization of molecular and cellular disease mechanisms, and preclinical development of therapeutics. Her work has been recognized by elected membership in the American Society of Clinical Investigators and the American Association of Physicians. She serves as an advisor to multiple SMA, CMT, and peripheral neuropathy nonprofit foundations, government, and private companies. She is the coeditor of the only comprehensive book on SMA: Spinal Muscular Atrophy Disease Mechanisms and Therapy.

ATP Life Science Ventures

Alexander McCampbell is a venture partner at ATP. A pharmaceutical scientist specializing in rare and neurodegenerative diseases, Alex worked at Biogen for nine years, most recently as a vice president building and leading a translational team of 25 people in neuromuscular and muscle research. He has advanced eight agents into the clinic with a range of modalities, including antibodies, small molecules, and antisense oligonucleotides, in disease areas including amyotrophic lateral sclerosis, Alzheimer’s disease, and spinal muscular atrophy (SMA). These efforts have resulted to date in one approved drug for SMA (Spinraza™) and multiple drug candidates in proof of concept or pivotal stage trials. Alex has also been integral in multiple business development deals as the scientific point person on strategic collaborations. He has more than 30 publications spanning nearly two decades and multiple patents, and he has participated on scientific advisory boards and NIH study sections. Alex received his PhD in neuroscience from the University of Pennsylvania and completed his post-doctoral training at Harvard Medical School.

Patient Liason to SRB

Ed Meyertholen is a person living with Kennedy’s Disease. He went to Boston College where he graduated with a Biology/Chemistry major. He then attended graduate school at Purdue University and received his Ph.D. in biology in 1982. After holding faculty positions at several universities, he settled in Austin, TX where he taught Cell and Molecular Biology, Genetics and Physiology at Austin Community College. In 2005, Ed was awarded a sabbatical leave and was able to do research on Kennedy's Disease in the lab of Dr. Diane Merry at Thomas Jefferson University in Philadelphia. In 2012, Ed accepted a position as Assistant Dean and Director of Pre-Health Programs at Georgetown College, Georgetown University, Washington, DC. Now retired, Ed is well-known to the KD community for his informative and entertaining lecture on the biology of Kennedy’s Disease at KDA’s annual conference.