Patrick Agnew, DPM, FACFAS, FACFAP, has treated patients in his private practice for the past twenty years. For those with EDS, Dr. Agnew addresses such issues as clubfoot, flatfeet, orthotics, and weak ankles. He is the Founder and current Director of the Eastern Virginia Medical School of Podiatric Medicine/Surgery Residency, as well as past President of the American College of Foot and Ankle Pediatrics. He was also a Commander in the Medical Service Corps, US Naval Reserve. Read more about Patrick Agnew, DPM, here.
Carrie Atzinger, MS, CGC, is a graduate of the University of Cincinnati’s Genetic Counseling Program. Since 2006, she has been the genetic counselor and clinical coordinator of the EDS Clinic at Cincinnati Children's Hospital. There, she helps conduct EDS-related research studies. Ms. Atzinger was an invited speaker at the 2009 conference of the National Society of Genetic Counselors.
James Black, MD, a vascular surgeon, joined the faculty of the Johns Hopkins Hospital in 2004, after completing two research fellowships (Massachusetts General and Johns Hopkins) and a clinical fellowship (Johns Hopkins). In addition to his interest in open surgical reconstruction of carotid, extremity and complex aortic disease, he aggressively pursues the application of minimally invasive technologies for patients with aortic aneurysms and aortic dissection, occlusive arterial disease, and venous disease. His research interests include the cellular and molecular events behind aortic wall homeostasis, and the phenotypic changes seen in heritable aorti conditions of the thoracoabdominal aorta. His clinical interests include the treatment of aortic dissection and arterial thrombosis. Read more about James Black, MD, here.
Maggie Buckley, MBA, is a past President of the EDNF Board of Directors and a person living with EDS. She is a volunteer patient advocate with non-profit support organizations such as the American Pain Foundation and the National Fibromyalgia Association. Currently, Ms. Buckley serves as Treasurer of the American Pain Foundation’s Board of Directors. She speaks and writes on issues associated with EDS, and has testified on the local, state and federal levels regarding EDS, healthcare access, medical research and pain care. More information about Ms. Buckley can be found here. Find more information here about Ms. Buckley.
Joseph Ernest, MD, is Chairman of Obstetrics and Gynocology at the Carolinas Medical Center. Clinically, he focuses on pre-conception counseling and high-risk pregnancies. Read more about Joseph Ernest, MD, here.
Clair Francomano, MD, attended Yale College as an undergraduate and received her MD from Johns Hopkins University School of Medicine. She trained in Internal Medicine and Medical Genetics at Johns Hopkins and joined the full-time Hopkins faculty in 1984. Since then, she has been involved in research and patient care for persons with hereditary disorders at every level. In 1994, she became Chief of the Medical Genetics Branch at the National Human Genome Research Institute, serving as its Clinical Director 1996-2001. From 2001 to 2005, she was Chief of the Human Genetics and Integrative Medicine Section in the Laboratory of Genetics, National Institute on Aging. She became Director of Adult Genetics at the Harvey Institute of Human Genetics at the Greater Baltimore Medical Center in 2005. Dr. Francomano has published over 100 peer-reviewed papers and continues to see patients. Learn more about Clair Francomano, MD, here.
Rodney Grahame CBE, MD, FRCP, FACP, FRSA, is a Consultant Rheumatologist at the University College Hospital and Honorary Professor at University College London in the Department of Medicine. He is also an Affiliate Professor of Pathology in the School of Medicine at the University of Washington in the United States. Dr. Grahame co-authored a number of landmark books on Ehlers Danlos and similar syndromes, including, Hypermobility of Joints and Hypermobility Syndrome: Recognition and Management for Physiotherapists. Recently, he was awarded the CBE (Commander of the Order of the British Empire) for services to rheumatology. He is a regular contributor to the website of The Hypermobility Syndrome Association whose website you can find here.
Scott Greenberg, MD, is a physician at the Magaziner Center for Wellness in Cherry Hill, NJ. Dr. Greenberg specializes in holistic sports medicine and regenerative medicine, and uses natural biological methods such as prolotherapy and platelet rich plasma (PRP) injections to repair damaged ligaments, tendons, and joints. Dr. Greenberg's methods have been used to treat both chronic and acute pain in patients of all ages, and he used and developed treatments to cure his own chronic headaches. He has found success in treating EDS patients’ joint issues with prolotherapy. You can read more here about Dr. Greenberg.
Fraser Henderson, MD, is a Maryland neurosurgeon specializing in complex spine surgery, degenerative spine issues, spinal deformities, spinal cord trauma, tumors, and minimally invasive spine surgery. In private practice now, he only recently left the Georgetown Medical Center where he was Director of Neurosurgery of the Spine & Craniocervical Junction, as well as Co-Director of Radiosurgery. Dr. Henderson has been involved in many neurosurgery-related medical inventions during his career. As a leading authority on neurosurgery, he speaks frequently at national and international meetings, as well as on radio and television programs. He has been named numerous times as one of the “Best Doctors in America” (2001-2010), and the Consumer Research Council of America listed him as a Top Surgeon in 2008. Read more about Frasier Henderson, MD, here.
Kathleen Kane, Esq., is a former Pennsylvania Assistant District Attorney. Since 1997, she has been in private practice, representing, among others, those who have been denied Social Security benefits. After her husband became disabled due to Marfan’s in 2001, Kathleen devoted more of her time and commitment to Social Security Disability cases. She has been successful in obtaining benefits for Marfan and other Connective Tissue Disorder claimants in Arkansas, Colorado, Illinois, Michigan, Massachusetts, New York, Oklahoma, Oregon, Pennsylvania and Wisconsin. She is currently pursuing cases on behalf of connective tissue disorder claimants throughout the United States. Read more about Kathleen Kane, Esq., here.
Stacey Le Fevre, MA, is a doctoral candidate at the University of Indianapolis. She is expected to earn her PsyD in Child and Health Psychology in May 2011 after completing a clinical internship at Children’s Hospital and Research Center in Oakland, CA. Ms. Le Fevre, who has the hypermobile variant of EDS, received her BS in Psychology from the University of Maryland at Baltimore and completed her MA in clinical psychology at the University of Indianapolis. Her doctoral dissertation explored the link between EDS—particularly the pain that comes with HEDS—and depression. Ms. Le Fevre plans to pursue both clinical and research endeavors after graduation.
Howard Levy, MD, PhD, is an Assistant Professor of Internal Medicine at the McCusick-Nathan F. Institute of Genetic Medicine, Johns Hopkins University. He is board certified in both internal medicine and clinical genetics. His clinical and research interests include EDS and related disorders of connective tissue; primary care of adults with genetic conditions; genetic risk assessment for common complex diseases; and integration of genetics into primary care medicine. He is active in several educational programs developed by the National Coalition for Health Professional Education in Genetics. He serves on the advisory boards of foundations for Cornelia de Lange syndrome and Joubert syndrome, as well as on the executive committee of the Adult Genetics Special Interest Group of the American College of Medical Genetics. Read more about Howard Levy, MD, PhD, here.
Trish Magyari, MS, CGC, was trained initially as a genetic counselor, and has approximately three decades’ experience as a counselor, educator, researcher, and meditation practitioner. Her specialty is Mindfulness-based Stress Reduction, which among other things, has been shown to lower pain levels and give practitioners a better ability to cope with pain that may not go away. Ms. Magyari has been on the faculty of many Baltimore-area medical centers. Currently, she is an intern at the Center for Integrative Medicine at the University of Maryland School of Medicine, as well as an Adjunct Assistant Professor in the Genetic Counseling Training Program at Johns Hopkins Bloomberg School of Public Health. Read more about Trish Magyari, MS, CGC, here and also here.
Nazli McDonnell, MD, PhD, graduated from University College Cork and Towson University with a BA degree in philosophy and a BS degree in chemistry and biology. She completed the MD/PhD program in University of Maryland Medical School in 1998. Dr. McDonnell's clinical training consisted of a residency in Internal Medicine at York Hospital, Pennsylvania, and a Medical Genetics Fellowship at the Metropolitan Washington, DC Genetics Fellowship Training Program at National Human Genome Research Institute at the National Institutes of Health. In 2003, Dr. McDonnell joined Dr. Clair Francomano's laboratory at the National Institute on Aging, Laboratory of Genetics to study hereditary disorders of connective tissue. Upon Dr. Francomano's departure, she moved to the Laboratory of Clinical Investigation. Her professional memberships include Sigma Xi, American Medical Association, American Women's Medical Association, American Association for the Advancement of Science, American Society of Human Genetics, and Phi Kappa Phi. Dr. McDonnell's research is focused on clinical and molecular investigations of hereditary disorders of connective tissue (HDCT). The disorders of interest are Ehlers-Danlos syndrome (EDS), Marfan syndrome, Stickler syndrome, hereditary aneurysm syndromes and fibromuscular dysplasia (FMD). Dr. McDonnell is investigating the natural history of these disorders at the NIA-ASTRA Unit, as well as studying genotype/phenotype correlations, molecular and cellular mechanisms and exploring treatment strategies in the laboratory. Read more aboud Nazli McDonnell, MD, PhD, here.
Linda Neumann-Potash, RN, MN, CBN, an EDS patient, herself, is a former Executive Director of EDNF (1995-2003). She has been a nurse in various capacities for 25 years, currently serving in the position of Bariatric Surgery Case Manager at the Nebraska Medical Center. Throughout her career, she has developed and led popular educational programs and support groups for patients, patients' families, and medical professionals.
Alan Pocinki, MD, FACP, practices internal medicine as a Clinical Associate Professor at George Washington University Medical Center. He received his medical degree from the Cornell University Medical College, and completed his internship and residency at Washington Hospital Center. In 1997, Dr. Pocinki was awarded the title of Young Internist of the Year by the American Society of Internal Medicine. More recently, the D.C. Medical Society’s Board of Trustees honored him with its Distinguished Service Award. His patients voted him one of the "Top Primary Care Doctors in Washington", and his peers named him one of Washingtonian Magazine's "Top Doctors." He also has served as the President of the D.C. Society of Internal Medicine. Read more about Alan Pocinki, MD, here.
Melanie Pepin, MS, CGC, is a genetic counselor and manager of the clinical diagnostic service of the Collagen Diagnostic Laboratory at the University of Washington in Seattle. Before entering the laboratory and clinical research realm, she provided genetic counseling to families of children with inherited disorders, including osteogenesis imperfecta and EDS. She was instrumental in developing the Connective Tissue Special Interest Group of the National Society of Genetic Counselors and has been an invited speaker at the national meetings of numerous genetic interest groups, including the American Society of Human Genetics. Link to Ms. Pepin’s laboratory’s website here.
Kylie A. Roach, MS, earned a Masters of Science in Biomedical Sciences at the University of Toledo, after which she performed scientific research for several years. Ms. Roach became interested in Traditional Chinese Medicine after receiving relief from her Hypermobile EDS symptoms through acupuncture treatments. She then spent several years training to become a Chinese Medicine Practitioner and Acupuncturist, herself, at the Pacific College of Oriental Medicine in Chicago. Her professional interests include treating chronic diseases and chronic pain.
Jonathan Rodis, MBA, has over 20 years’ experience in business management and consulting. In 2001, after becoming permanently disabled from Marfans, Mr. Rodis became involved with several awareness initiatives related to connective tissue diseases. He has helped many people win approval for Social Security Income and Social Security Disability Income. He currently serves as President of the National Marfan Foundation’s Massachusetts Chapter, as well as Chair of the Chapter’s Physicians Awareness Committee. Read more about Jon Rodis, MBA, here.
Jay P. Shah, MD, a physiatrist, is Director of the Medical Rehabilitation Training Program at the NIH. He completed his residency in Physical Medicine & Rehabilitation at New York Medical College and currently is a Diplomate of the American Board of Physical Medicine & Rehabilitation. He also is an instructor in medical acupuncture at Harvard Medical School and New York Medical College. His research interests include the pathophysiology of myofascial pain, and the integration of physical and complementary medicine in the management of neuromusculoskeletal pain and dysfunction. He uses microanalytical techniques to study the unique biochemical milieu of myofascial trigger points. Dr. Shah lectures internationally on mechanisms of chronic pain, myofascial pain, acupuncture techniques and related topics. Read more about Jay Shah, MD, here.
Glenda Sobey, MB, ChB, BSc Med (Hons), FCDerm, is Consultant Dermatologist and Clinical Lead for the Ehlers-Danlos Syndrome National Diagnostic Service in Sheffield, United Kingdom. Dr. Sobey has a longstanding professional interest in EDS, having been research fellow to Professor Peter Beighton during her specialist training. The EDS National service strives to provide accurate diagnosis in cases of suspected EDS through a holistic approach using clinical assessment with molecular genetic and clinical chemistry testing. More information about Dr. Sobey can be found here. See also Sheffield Children’s EDS page.
Sara Strecker, MS, is a PhD candidate at the University of Connecticut studying skeletal biology. She earned her BS in Biochemistry from Worcester Polytechnic Institute and her MS in Biology from Saint Joseph College. She was officially diagnosed with Ehlers-Danlos Hypermobility Syndrome five years ago. Sara ultimately wants to concentrate her research on EDS. Ms. Strecker is a regular contributor to Loose Connections and a member of the Western Connecticut EDS Support Group.
Brad Tinkle, MD, PhD, is a clinical geneticist at Cincinnati Children’s Hospital and current head of EDNF's Physicians Advisory Network. He holds a BSE in Genetic Engineering from Purdue University, received his MD from Indiana University, and has a PhD in Genetic Research from George Washington University. Currently, he serves as clinical director of the Marfan/Ehlers-Danlos Syndrome Clinic at Cincinnati Children’s Hospital. He is active in research, both as a clinician and as assistant director of their Molecular Genetics Laboratory. His research focuses on mammalian gene transfer and on identifying new genes in connective tissue disorders. Finally, Dr. Tinkle deserves our thanks for serving on the board of EDNF, as well as for his instrumental role in putting together this year’s ENDF conference. Read about Brad Tinkle, MD, PhD, here on our site; there is more on the Cincinnati Children's Hospital site.
Kathleen Zonarich, PT, has worked for 18 years as a physical therapist in home healthcare and physical rehabilitation programs. She is particularly skilled at aquatic physical therapy and at rehabilitating patients with neurological conditions. Ms. Zonarich lectures regularly in the Physical Therapy Assistant Program at Central Pennsylvania College where she is an adjunct professor. In addition, she provides personal training at a fitness center to individuals transitioning from physical therapy to a regular exercise program. Read more about Kathleen Zonarich here.