Following is an alphabetical listing of speakers who have confirmed their participation in EDNF's 2013 Learning Conference; however, schedules can change, so please check back for updates. We will post changes as they become available. Last updated: May 3, 2013.
Patrick Agnew, DPM, has been a resident of Tidewater since 1979. After living in several parts of the United States, he decided that Tidewater is the best place to raise a family. He is happily married to his wife, Heidi, whom is a lifetime resident of Tidewater and works for Coastal Podiatry as the surgery coordinator. Together they enjoy raising and caring for their three children, Megan, Michael and Matthew.
After completing pre-medical studies at Montgomery College and Old Dominion University, Dr. Agnew attended the Pennsylvania College of Podiatric Medicine. The school is recognized for consistently demonstrating the highest board scores and residency appointments of the seven schools of Podiatry. The four-year curriculum parallels general medical schools for the first two years, then becomes specialized with the latest information on diagnosis and treatment of all disorders of the foot and leg. He earned four research awards and the clinical award for the highest degree of clinical proficiency in the class.
Dr. Agnew served a Podiatric Surgical residency after medical school. This is the most competitive type of Podiatric residency. His residency director, Dr. James Ganley, was widely considered the world's leading authority in pediatric podiatry. Dr. Agnew is board certified in Foot and ankle surgery. Dr. Agnew's memberships include: Professional Advisory Network of the Ehlers-Danlos National Foundation, the American Podiatric Medical Association, the Virginia Podiatric Medical Association, the Hampton Roads Podiatric Medical Society, and the Association of Military Surgeons of the United States. He is a past president of the American College of Foot and Ankle Pediatrics and the Hampton Roads Podiatric Medical Society. Academic appointments include: Adjunct faculty Temple University School of Podiatric Medicine, and he is the founder and director of the Eastern Virginia Graduate School of Medicine Podiatry Residency. Dr. Agnew is the pediatric editor of the newsletter of the Virginia Podiatric Medical Association, Footnotes. He is a manuscript reviewer for the journal of the Association of Military Surgeons of the United States, Military Medicine. He also is the pediatrics section editor of the Journal of Foot and Ankle Surgery.
Dr. Agnew is a Captain in the Unites States Naval Reserve, retired. He was decorated for service during Operation Desert Shield and served as active duty in the International War on Terror. Hobbies include: surfing, Korean karate, scuba, and skiing/snowboarding.
Richard Barnum, MD, is a child and adolescent forensic psychiatrist. He directed the Boston Juvenile Court Clinic from 1982 to 2003, conducting evaluations of thousands of children and families involved in juvenile court. He was formerly on the faculty of the University of Massachusetts and Harvard Medical Schools, and has written on issues of forensic assessment of children and families and mental health concerns in the juvenile justice system. Since 2003, he has been in the private practice of psychiatry, providing consultation and treatment for children and families in community and residential settings. This work has included increasing involvement with children suffering from various hard-to-diagnose medical conditions.
James H. Black, MD, Bertram M. Bernheim, MD Associate Professor of Surgery, joined the surgical faculty of the Johns Hopkins Hospital in 2004. He completed his General Vascular Surgery Fellowship in the Division of Vascular and Endovascular Surgery at the Massachusetts General Hospital and received his General Surgery Training in the Halsted General Surgery Training Program at the Johns Hopkins Hospital. He pursues the application of minimally invasive endovascular technologies for patients with aortic aneurysms and aortic dissection, disease of the carotid, renal, mesenteric, and lower extremity arteries. His research interests include the cellular and molecular events underpinning the development of aortic catastrophe in both atherosclerotic and connective tissue disorders, as well as diagnosis of aortic dissection and malperfusion syndromes.
B.A., College of the Holy Cross, Worcester, MA
M.D., Northwestern University School of Medicine, Chicago, IL
Internship: Johns Hopkins Hospital, Baltimore, MD
Residency: Johns Hopkins Hospital, Baltimore, MD
Fellowship: Massachusetts General Hospital, Boston, MA
Research Fellowship, Johns Hopkins School of Medicine
Research Fellowship, Massachusetts General Hospital
Registered Vascular Technician, ARDMS, 2004
Board Certified by American Board of Surgery: General Surgery
Board Certified by American Board of Surgery: Vascular Surgery
Heather Butler-Pierce, MEd, graduated from Loyola University with concentrations in Special Education and Literacy. After the effects of EDS complicated a career in Special Education and advocacy for children with special needs, Heather has continued through volunteer work to help others.Heather is currently working with the Episcopal Diocese of Maryland on an educational task force that seeks to create community partnerships with volunteers, churches and schools to help disadvantaged children. Heather is also a co-leader of the Maryland Ehlers-Danlos Support Group and a volunteer advocate for EDS awareness and patient rights. She has spoken on behalf of those with EDS and pain conditions at the NIH and FDA. Her diagnostic story was an article "Zebras with different stripes: One patient's story" in Stanford Medicine's online journal, Scope, found here.
Pradeep Chopra, MD, completed his Anesthesia residency from Harvard Medical School. He then went on to complete his Fellowship in Pain Management, also from Harvard Medical School. He is the recipient of several awards including the John Hedley-Whyte Award in Critical Care Medicine and the Nancy E. Oriol Award in Obstetric Anesthesia. He holds the prestigious appointment of Assistant Professor (Clinical), Department of Medicine, Brown Medical School, Division of Biology and Medicine and Assistant Professor of Anesthesiology (Adjunct), Boston University School of Medicine.
Dr. Chopra is double Board Certified in Pain Management and Anesthesiology by the American Board of Anesthesiology. He is Board Certified by the American Board of Independent Medical Examiners (ABIME). He is the author of several publications on Chronic Pain including several book chapters. He is a member of the editorial board for Journal of Cancer Pain and Symptom Palliation and Pain Physician.
Dr. Chopra has a keen interest in both Acute and Chronic Pain Management. His areas of interest are Back Pain, Neck Pain, Joint Pain, Arthritis, and Muscle Pains. He has an extensive experience in complex Pain states, Headaches, Neuropathic Pain and most chronic pain conditions. His approach to treatment of Chronic and Complex Pain states is multi-disciplinary and multi-modality, including Interventional Pain Management, Physical Therapy, Relaxation Techniques, Biofeedback and Psychological Approach. His approach for Chronic Pain patients is to get them to a point to allow them to do the things they want to do and not let Pain take over their lives.
Heidi A. Collins, MD, received her medical degree from Northwestern University in Chicago, IL and completed her residency in Physical Medicine and Rehabilitation at the University of Washington in Seattle, WA. She is board certified in Physical Medicine and Rehabilitation and currently practices with Memorial Medical Group in South Bend, IN. Dr. Collins provides inpatient and outpatient care to patients with a wide variety of diagnoses including: spinal cord injury, stroke, traumatic brain injury, orthopedic injuries including poly-trauma, chronic musculoskeletal or neuropathic pain, work-related injuries, multiple sclerosis, muscular dystrophy, progressive neurodegenerative disorders, movement disorders, and general rehabilitation. She also performs electrodiagnostics.
Dr. Collins has a special interest in hypermobility syndromes and their extra-articular (non-joint) manifestations, including the management of Postural Orthostatic Tachycardia Syndrome. Her interest in this area comes naturally, given her training and experience in a specialty which fundamentally emphasizes a patient goal-based focus in an effort to enhance and restore functional ability and quality of life to those with physical impairments or disabilities. However, her special interest in the care and treatment of persons with hypermobility is in fact in her genes, as she has Ehlers-Danlos Syndrome. She brings a unique perspective to the Ehlers-Danlos National Foundation 2013 Learning Conference. She is not only a physician very comfortable treating patients with Ehlers-Danlos, but she is also an Ehlers-Danlos patient, and a daughter, a sister, and a parent of those in her family also affected. She is particularly experienced and able to empathize with the impact of the disorder.
Joseph Ernest, MD, graduated from the University of Mississippi School of Medicine and completed residency in obstetrics and gynecology at Charlotte Memorial Hospital in 1982. He completed a fellowship in Maternal Fetal Medicine at the Bowman Gray School of Medicine in 1984 and remained on the faculty until 2008, when he returned to Charlotte to become Chair of the Obstetrics and Gynecology department at the Carolinas Medical Center.
He became board certified in Obstetrics and Gynecology in 1985 and in Maternal Fetal Medicine in 1987. He served as Clerkship Director for the Department of Obstetrics and Gynecology from 1984-1999 and as Residency Program Director from 1996-2001. In 1998 he joined the Office of Student Services as Assistant Dean, becoming Associate Dean from 2005-2008.
He was a committee member of Step 3 of the United States Medical Licensing Examination (USMLE) from 1993-2001, a member of the National Board of Medical Examiners from 1996-2001, and Chair of the USMLE Step 3 Family and Community Test Material Development Committee from 1996-2001. He was selected to the Undergraduate Medical Education Committee of the Association of Professors of Gynecology and Obstetrics (APGO) from 1998-2002, serving as Chair of the committee from 2000-2002. He was elected President of APGO in 2005. He is currently a board examiner for the American Board of Obstetrics and Gynecology.
His research interests include prematurity prevention, infectious diseases in pregnancy, and topics in medical education. He has published 6 book chapters and authored or co-authored 50 articles. His interest in Ehlers-Danlos syndrome stems from his participation in EDNF learning conferences over the past several years and his management of pregnant patients with EDS.
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.
Michael P. Healy, PT, DPT, DOMTP, CSN, CPT, MBA graduated from the University of New England with a Bachelor's Degree in Physical Therapy and Bryant University with an MBA. He is Sports Nutritionist Certfied (CSN) and Personal Trainer Certified (CPT) by the American Muscle & Fitness Personal Training Institute and Titleist Performance Institute Certified Golf Fitness Instructor. He holds a Doctorate in Osteopathic Manipulative Theory & Practice, DOMTP, from Osteopathic College of Ontario and Doctor of Physical Therapy, DPT, from Simmons College.
He has been a practicing physical therapist for the past 27 years and is currently in private practice at Healy Physical Therapy & Sports Medicine. His specialty is advanced manual therapy with a personal interest in Ehlers-Danlos syndrome patients, combining biomechanics with the natural healing power of the body to assist in correcting any mal-alignments. Once he stabilizes an EDS patient's body, he enjoys teaching them correct core stabilization exercises.
Fraser Cummins Henderson Sr., MD, was foreman on a cattle station in the Outback of Australia before receiving his bachelor's and medical degree at the University of Virginia, Charlottesville. He served for with the Multi-National Peace Keeping Force in Beirut, earning the Navy Commendation Medal for preparedness of and treatment of mass casualties following the terrorist bombing attack in Beirut, Lebanon, October 1983. After completing his residency under Phanor Perot at the Medical University of South Carolina, he returned to complete his active duty obligation at the National Naval Medical Center, Bethesda, MD, as Director of Spine. He was Brigade Neurosurgeon for the 4th Marine Expeditionary Brigade in Desert Shield and Desert Storm during the First Gulf War. He then completed a fellowship in Craniospinal surgery under Professor Alan Crockard at The National Hospital for Neurology and Neurosurgery, Queen Square, London.
Finishing his tour with the US Navy, Commander Henderson joined Georgetown University, in Washington, D.C. as Director of Neurosurgery of the Spine and Cranio-cervical Junction. He was Co-Director of the Lombardi Neuro-Oncology Division, Co-Director of the CyberKnife Radiosurgery Center, and Medical Director of the Neuroscience Nursing Units. He was Professor of Neurosurgery and Radiology at Georgetown University, where he was active in advancing CyberKnife radiosurgery for treatment of chordoma and other complex spinal tumors. He developed intellectual property for three inventions relating to spinal radiosurgery and spinal cancer, including the TPS®—Telescopic Plate Spacer—a vertebral replacement device for metastatic disease and was Principal Investigator in the translational development of a radio-sensitizing drug, and a drug to block the malignant invasiveness of Glioblastoma Multiforme.
Dr. Henderson entered private practice in Bethesda, MD, as Director of Neurosurgery at Doctors Hospital and Director of the Chiari Center of Excellence, where he is focused on the development of the understanding and treatment of deformity induced injury to the brainstem and spinal cord in Chiari Malformation and Ehlers-Danlos syndrome. He is inventor of 11 devices and concepts relating to disorders of the brainstem and spinal cord, and has published over 50 peer reviewed articles and book chapters, and given over 120 invited lectures with a focus on craniocervical disorders, Chiari malformation, cancer, radiosurgery and unusual problems of the spine. Dr Henderson lives with his wife, Becky, and three sons—Fraser, Lansdale and Landon—on a farm in Prince Georges County, MD.
Michael F. Holick, PhD, MD, is Professor of Medicine, Physiology and Biophysics; Emeritus Chief of Endocrinology, Diabetes, and Nutrition; Director of the General Clinical Research Unit; and Director of the Bone Health Care Clinic and the Director of the Heliotherapy, Light, and Skin Research Center at Boston University Medical Center.
After earning a PhD degree in biochemistry, a medical degree, and completing a research postdoctoral fellowship at the University of Wisconsin, Madison, Dr. Holick completed a residency in medicine at the Massachusetts General Hospital in Boston. Dr. Holick has made numerous contributions to the field of the biochemistry, physiology, metabolism, and photobiology of vitamin D for human nutrition. As a graduate student he was the first to identify the major circulating form of vitamin D in human blood as 25-hydroxyvitamin D3. He then isolated and identified the active form of vitamin D as 1,25-dihydroxyvitamin D3. He participated in the first 21 step chemical synthesis of 1,25-dihydroxyvitamin D3 that was used in the first clinical trials to treat renal osteodystrophy and inborn and acquired disorders in vitamin D metabolism including pseudovitamin D deficiency rickets. He determined the mechanism for how vitamin D is synthesized in the skin, demonstrated the effects of aging, obesity, latitude, seasonal change, sunscreen use, skin pigmentation, and clothing on this vital cutaneous process. Dr. Holick has established global recommendations advising sunlight exposure as an integral source of vitamin D. He has helped increase awareness in the pediatric and medical communities regarding vitamin D deficiency pandemic, and its role in causing not only metabolic bone disease, and osteoporosis in adults, but increasing risk of children and adults developing common deadly cancers, schizophrenia, infectious diseases including TB and influenza, autoimmune diseases including type 1 diabetes and multiple sclerosis, type 2 diabetes, stroke and heart disease. He also observed the pregnant women who were vitamin D deficient were at increased risk for preeclampsia and requiring a C-section. Dr. Holick pioneered a novel treatment for psoriasis through translational research demonstrating that the active form of vitamin D could be used for the treatment of this
hyperproliferative skin disorder. This treatment is considered to be the first line treatment for most patients with mild psoriasis.
Dr. Holick is a Diplomate of the American Board of Internal Medicine, a Fellow of the American College of Nutrition, and a member of the American Academy of Dermatology and the American Association of Physicians. He is the recipient of numerous awards and honors, including the American Skin Association's Psoriasis Research Achievement Award, the American College of Nutrition award, the Robert H. Herman Memorial Award in Clinical Nutrition from the American Society for Clinical Nutrition, the Annual General Clinical Research Centers' Program Award for Excellence in Clinical Research, the Linus Pauling Functional Medicine Award from the Institute for Functional Medicine, the Linus Pauling Prize for Human Nutrition, the DSM Innovation Award and most recently, the AACC Outstanding Speaker Award for 2009. Dr. Holick serves on a number national committees and editorial boards and has organized and/or co-chaired several international symposia. He served as the chair for the Endocrine Society's Practice Guidelines on Vitamin D. He has authored more than 400 peer-reviewed publications, and written more than 200 review articles, as well as numerous book chapters. He has acted as editor and/or co-editor on 13 books, and wrote The UV Advantage in 2004 and The Vitamin D Solution in 2010.
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.
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.
Jeff Milunsky, MD received his MD degree, magna cum laude, from Boston University School of Medicine in 1992. He received multiple awards and prizes including Alpha Omega Alpha, National Honor Medical Society. He completed his residency in Pediatrics at New England Medical Center and two fellowships, Clinical Genetics and Clinical Molecular Genetics, at Boston University. He is board certified in Clinical Genetics, Clinical Molecular Genetics, and Pediatrics. Dr. Milunsky joined Boston University School of Medicine in 1995 and was made Professor of Pediatrics and Genetics and Genomics in 2008. He has served as Medical Director of the Masters Degree program in Genetic Counseling at Boston University School of Medicine from 2005-2012.
Dr. Milunsky is the Co-Director of the Center for Human Genetics, Inc., the Director of Clinical Genetics, and Senior Director of Molecular Genetics at their new facility in Cambridge,MA. He discovered the gene that causes the Branchio-Oculo-Facial syndrome and found that mutations in the gene FGF10 can cause Lacrimo-Auriculo-Dental-Digital syndrome. He has received NIH funding for his studies on Waardenburg and Kabuki syndromes. He is the co-editor of the 6th edition of the major reference text Genetic Disorders and the Fetus: Diagnosis, Prevention, and Treatment. He has written or coauthored over 250 scientific communications. His research interests include the genetic etiology of autism/ developmental disorders/multiple congenital anomaly syndromes. He is an elected member of the Society for Pediatric Research and Fellow of the American College of Medical Genetics. His clinical expertise includes evaluation of individuals with developmental disorders/autism and those with connective tissue disorders such as Ehlers-Danlos syndrome. He has been voted by his peers as one of the Top Doctors in Genetics in Boston in 2011.
John Mitakides, DDS, FAACP, is a graduate of the Ohio State University Dental School, and has focused his practice on the treatment of TMJ and craniofacial pain for over 30 years. He has taught TMJ treatment technique, as well as courses on expert witness and legal case presentation and testimony on the subject of TMJ injuries.
Dr. Mitakides is a leading expert in the field of TMJ disorder and craniofacial pain in conjunction with Ehlers-Danlos syndrome. He serves on the Professional Advisory Network of EDNF. His practice is centered at The TMJ Treatment Center, a state-of-the-art facility. Dr. Mitakides is supported by a diverse team of professionals, including two patient care assistants who are dually TMJ-Certified and Expanded Function Dental Assistants, the highest level of training from the American Academy of Craniofacial Pain and the State of Ohio. Located near Dayton, Ohio, The TMJ Treatment Center utilizes polychromatic infrared therapy, ultrasound, digital x-ray, digital intraoral imaging and more to assure complete, attentive care.
Dr. Mitakides is licensed for the practice of dentistry in both Ohio and Texas, and is on the staff of Kettering Medical Center.
Kevin Muldowney, PT, graduated from the University of Rhode Island with a master's of science degree in physical therapy. Kevin is the owner of Muldowney Physical Therapy which uses a variety of manual therapy techniques and exercises to assist their patients to better postural alignment. Kevin has been working with patients with Ehlers-Danlos syndrome for the past eight years. With the EDS population, Kevin focuses on the biomechanical faults of each joint involved and how those faults affect the patient's overall functions. He then works with these patients and family members, instructing them in self correction techniques and exercises to manage their malalignments at home.
Eric S. Palmer, BOCO, BOCP has been in the Orthotics and Prosthetics field for over 20 years. He is a board certified Orthotist and Prosthetist as well as a RI Licensed Orthotist. He is the owner of Pedorthic Technologies Inc. which specializes in the evaluation and measurement needed to provide a patient with doctor recommended devices as part of a comprehensive treatment program to help the patient achieve the support they need. In cases where a custom-made device is necessary, Eric personally evaluates, casts and fabricates the device in his on-site lab.
Eric's daily experiences include dealing with a wide range of medical conditions. Over the past several years he has enjoyed working with both doctors and physical therapists locally, as well as professionals from across the country whose patients seek orthotic treatment. Eric strongly believes that each patient should be treated as an individual. He is known for his ability to think "outside the box" and thoroughly enjoys assisting in the formulation and implementation of a treatment plan to address a patient's specific needs.
Alan Pocinki, MD, FACP, practices internal medicine as a Clinical Associate Professor at George Washington University Medical Center; he is a Fellow of the American College of Physicians. 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.
Abbas Qutab, MBBS, DC, PhD, OMD, has a passion to help people to improve their personal health naturally. In 1989, he founded Dr. Q Health Care in Worcester, Massachusetts. He also has served as a consulting physician at the Brigham and Women's Faulkner Hospital in Boston and holds medical, chiropractic, and oriental medicine degrees as well as a Ph.D. in ayurvedic medicine.
He continues to practice at his clinic in Massachusetts. He combines the best of eastern and western medicine in an integrative, holistic approach. His integrative philosophy has been recognized by organizations the world over including the World Health Organization. He is one of the few physicians in the U.S. who has been awarded an honorary Sc.D. from the World Health Organization Charter University for his work in promoting alternative medicine. Dr. Qutab was a Senior Research Fellow with the Neuroscience Institute and an Assistant Professor in Clinical Sciences with the New York Chiropractic College. He has extensive experience in developing post-graduate certification programs for physicians in the area of integrative and complementary medicine. He was a co-founder of the post-graduate program in Acupuncture for physicians and was the Founder of New England Institute of Ayurvedic Medicine, with a branch in Italy. The Institute was responsible for training hundreds of practitioners in Italy and the U.S. in Ayurvedic Medicine.
Dr. Qutab is a Fellow of the International Academy of Medical Acupuncture and is Board Certified and a Diplomate in Pain Management and Forensic Medicine. He is also a Board Certified Naturopathic Physician and is Board Certified as a Disability Examiner. He also holds a Master Certification in Neuro-Linguistic Programming and is certified as a Life Coach. He is one of the very few physicians in the world who is certified as a yoga teacher by the world famous yoga teacher B.K.S. Iyengar and Ramamani Iyengar Institute in Pune, India. The recipient of numerous awards and the author of several publications, Dr. Qutab is a sought-after speaker for conferences and health expositions throughout the world. His speaking engagements include the World Health Organization, Congress on Complementary Medicine, and lectures at numerous hospitals, such as the Dana-Farber Cancer Institute, Massachisetts. General Hospital, UMass Memorial Hospital, and the Royal Society of Medicine in England.
Shani Weber, MS, graduated from George Washington University in Early Childhood Special Education and Early Childhood Development. She worked as a teacher, parent educator, and special education advocate. When symptoms related to her EDS brought a close to her work, Shani turned her skills toward helping those with EDS learn more about their condition and helping the world learn more about EDS. Shani is the Local Groups and Outreach Liaison for Ehlers-Danlos National Foundation. She assists local support groups to form and run well, moderates EDNF's online support group on Inspire, and serves as a patient advocate for the EDS community by speaking at FDA and NIH regarding issues important to us all. Shani is also a co-leader of her local EDS support group in Maryland. You can read more about Shani here.