EDNF Conference 2014 Speaker List

We are thrilled to announce the following speakers for the 2014 Learning Conference: Sam Bailey, MS, CGC Sam Bailey is a genetic counselor at the University of Washington Collagen Diagnostic Laboratory, a clinical laboratory specialized in the diagnosis and research of inherited connective tissue disorders. He also works in the University of Washington Genetic Medicine Clinic, providing genetic counseling services to adult patients with suspected or known connective tissue disorders.

Mr. Bailey received a Bachelor of Science degree in Biology from the University of Portland in 2010. In 2012 he completed his genetic counseling training at the University of Alabama-Birmingham. He was board certified in 2012 by the American Board of Genetic Counseling.

John Belmont, MD, PhD Dr. Belmont is a Pediatrician and Medical Geneticist practicing at Texas Children’s Hospital in Houston. He has a longstanding interest in the genetic causes of developmental and cardiovascular diseases. His medical work includes evaluation of children and adolescents for inherited connective tissue disorders such as Ehlers-Danlos Syndrome.

In addition to his clinical practice, Dr. Belmont conducts research on cardiovascular disorders. He has published numerous papers on the genetic causes of heart defects. He has also collaborated on the study of inherited aortic aneurysms. He is an Associate Director of the Cardiovascular Research Institute (CVRI) at Baylor College of Medicine.

Under his leadership the CVRI is in developing innovative genetic testing for cardiovascular disorders including EDS. Dr. Belmont grew up in San Antonio, Texas and received a B.A. degree from the University of Texas, Austin in 1974. He attended Baylor College of Medicine where he graduated with M.D. and PhD. Degrees in 1981. After Pediatrics training at Children’s Hospital National Medical Center, Washington, D.C. he returned to Baylor for post-doctoral research in genetics. He joined the faculty of Baylor College of Medicine in 1987. He is a member of the American Society of Human Genetics, American College of Medical Genetics, and an elected member of the American Society for Clinical Investigation and Association of American Physicians.

Lara Bloom Lara Bloom is the Chief Operations Office for Ehlers-Danlos Support UK (EDS UK). She has been working with the charity for over four years trying, to make the invisible visible for those with EDS. As a sufferer herself she always keeps to the forefront of her mind what it is that she wants as a member of the charity, and tries her hardest to deliver it.

Lara became the first person with EDS to complete the London Marathon in 2011 by walking the distance in 8 hours and 18 minutes. She fractured her foot on the 13th mile, but continued to the finishing line raising over £10,500 for EDS UK. A documentary was made following her journey called "Issues with my Tissues" which will be premiering in the US at the EDNF conference 2014.

Mary Boisen Henry Burkholder, MD Dr. Burkholder received his medical degree at Albany Medical College in Albany, New York. He completed his pediatric residency and his pediatric cardiology fellowship at the University of Texas at Houston Health Science Center, where he also served as chief fellow. Dr. Burkholder is board certified in pediatrics and board eligible in pediatric cardiology. His clinical interests include dizziness, neurocardiogenic syncope, exercise physiology and congenital heart disease.

Heather Butler-Pierce Heather Butler-Pierce, M Ed., 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.

Thomas Cleveland Heidi Collins, MD Dr. Collins 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. She currently works for Beacon Medical Group, affiliated with Memorial Hospital in South Bend, IN. Dr. Collins provides care in both inpatient and outpatient settings to patients with a wide variety of issues including: spinal cord injury, stroke, traumatic brain injury, orthopedic injuries including poly-trauma, chronic musculoskeletal or neurological conditions, progressive neurodegenerative disorders, movement disorders, and general rehabilitative needs.

She also performs electrodiagnostics and serves Memorial Hospital as Medical Director of the Rehabilitation Department's Wound Care Clinic. She is credentialed to provide Hyperbaric Oxygen Therapy.

Dr. Collins has a special interest in hypermobility syndromes, especially with respect to their extra-articular (non-joint) manifestations, such as dysautonomia and gastrointestinal dysfunction. Her interest in this area comes naturally, given her training and experience in Physical Medicine and Rehabilitation, 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's 2014 Learning Conference. She is not only a physician very comfortable treating patients with Ehlers-Danlos, but she is also an EhlersDanlos 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.

Sean Craig, PhD Shweta Dhar, MD, MS, FACMG Shweta Dhar, MD, MS, FACMG is a board certified Internist and Clinical Geneticist and is the Medical Director for the Adult Genetics Service at Baylor College of Medicine (BCM) in Houston, TX. She sees adult patients with known or suspected genetic conditions at BCM’s private faculty group practice at Jamail Specialty clinic center, Harris county hospital’s Smith Clinic and at the Michael E. Debakey VA Medical Center Genetics Clinic. She graduated with honors from NHL Medical College in Gujarat, INDIA after which she pursued a residency in Pathology at the M.P. Shah Cancer Hospital in Gujarat. Subsequently she completed a Masters’ course in Biotechnology at the Stephen F. Austin State University in Nacogdoches, TX. Following an Internal Medicine residency program at the New York Downtown Hospital in New York, NY she moved to Houston, TX to start a fellowship in clinical medical genetics and has been faculty at Baylor since 2008.

She has established the adult genetics clinical service at BCM and was instrumental in starting the first known genetics clinic in the VA system in one of the largest VA Medical Centers in the country. Besides her clinical endeavors, she has also been involved in research involving ethical, legal and social implications of large scale genomic risk assessment using the personalized medical genomic profile test available at Baylor’s Medical Genetics Laboratories and is currently a working member of the Undiagnosed Disease Network project.

Dr. Dhar is also involved in education of medical students at Baylor college of Medicine particularly in the field of adult genetics. She is one of the track directors for the Genetics track, the first such medical school track of its kind in the country. She is also involved in various genetics lectures for medical students and has been instrumental in changing the medical school genetics curriculum to give a balanced outlook of pediatric and adult genetics to the students as well as incorporating newer technologies and advances in personalized medicine. She was awarded the BCM Fulbright &

Jaworski Teaching award for Excellence in Education in April 2013 and the BCM Rising Star Clinician Award in May 2014.

Howard Epps, MD Howard R. Epps, M.D. is Assistant Chief of Orthopaedic Surgery and Medical Director, Pediatric Orthopaedics and Scoliosis at Texas Children’s Hospital in Houston, Texas. He is also an Associate Professor of Orthopaedic Surgery at Baylor College of Medicine.

A native of Washington, D.C., Dr. Epps was a cum laude graduate of the Sidwell Friends School. He finished Harvard College with honors, and completed medical school at The Johns Hopkins University School of Medicine. After his orthopaedic surgery training at Harvard, he served one year as a clinical fellow at The Hospital for Sick Children in Toronto.

Dr. Epps moved to Houston in 1996 to join Fondren Orthopedic Group, L.L.P., where he became a partner. After 16 years in private practice, he moved to Texas Children’s where he is currently employed. He serves on the voluntary staff of the Shriner’s Hospital in Houston, where conducts a cerebral palsy clinic.

Dr. Epps has interests in pediatric trauma, musculoskeletal infections, limb deformity correction, and cerebral palsy. He has served on the Board of Directors of the Pediatric Orthopaedic Society of North America and the Texas Orthopaedic Association, and as President of the Houston Orthopaedic Society. He also serves on the Editorial Board of AAOS Now. He lives in Houston with his wife Phyllis and his two boys Griffin, 11 and Campbell, 9. He enjoys biking, tennis, and listening to music.

William Ericson, MD Dr. Ericson is an award winning orthopedic hand surgeon with a special interest in painful conditions that do not show on standard diagnostic tests, including joint instability and peripheral nerve problems. He obtained his bachelor’s degree in Biochemistry from MIT with a thesis on collagen and elastin, and then graduated from Harvard Medical School. He is board certified in orthopedic surgery and hand surgery, and is in private practice in the Seattle area, with a large number of Ehlers Danlos Syndrome patients in his practice. He has developed a unique and highly successful approach to treating upper extremity pain and weakness in this patient population.

Dr. Ericson belongs over 20 specialty societies and is a Fellow of the American College of Surgeons, a Fellow of the American Academy of Orthopedic Surgeons, and a Fellow of the Association of Extremity Nerve Surgeons, who awarded him the Jules Tinel MD Award in 2009 for his work in this area. He was the Chief of Hand Surgery at Winchester Hospital, Winchester, MA from 1994 until 2005, and he is a past-President of the Massachusetts Orthopedic Association.

Clair Francomano, MD Rodney Grahame, CBE, MD, FRCP, FACP Erin Grigsby Erin Grigsby completed her pre-requisites at University of Georgia. She then graduated from Physical Therapy school Magnum Cum Laude in 1991 from Georgia State University.

Erin worked in acute care and work hardening at Cobb Hospital in Austell, Georgia. She then specialized in Outpatient Rehabilitation and Sports Medicine at Georgia Sports Medicine in Marietta, Georgia. She then went on to manager her own clinic in Calhoun, Georgia at NovaCare Outpatient Rehabilitation. This clinic was primarily worker’s compensation clientele involing the carpet industry. Erin also performed industrial ergonomic education at various carpet mills at this time.

After taking a few years off to have children, Erin returned to acute care and outpatient rehabilitation at Northside Cherokee Hospital. In 2009, Erin developed severe tennis elbow. She tried a Bauerfeind tennis elbow support (the EpiPoint) recommended by her tennis partner. She was so impressed with it that she sought out Bauerfeind and asked to work for them. Currently, Erin is the medical consultant for Bauerfeind USA in Marietta, Georgia. Personally, Erin plays tennis and does Pilates. She is active in her children’s school and sports. She and her husband are also involved in greyhound rescue and boating.

Fraser Henderson, MD Fraser Henderson 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 VA. 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 1st 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 radiosensitizing drug, and a drug to block the malignant invasiveness of Glioblastoma Multiforme.

Dr.Henderson entered private practice in Bethesda Maryland, 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, has published over 50 peer reviewed articles and book chapters, and given over 130 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, Maryland.

Glenda Holt Barb Kielaszek Diana Lebron, MD Brendan Lee, MD, PhD r. Lee is the Robert and Janice McNair Endowed Chair in Molecular and Human Genetics, Professor in the Department of Molecular and Human Genetics at Baylor College of Medicine, and an Investigator of the Howard Hughes Medical Institute. Dr. Lee directs the joint MD Anderson Cancer Center and Baylor College of Medicine Rolanette and Berdon Lawrence Bone Disease Program of Texas, and the Baylor College of Medicine Center for Skeletal Medicine and Biology. He is Founder and Director of the Skeletal Dysplasia Clinic at Texas Children’s Hospital, and of the Medical Student Research Track at Baylor. As a pediatrician and geneticist, Dr. Lee studies structural birth defects and inborn errors of metabolism. Dr. Lee identified the first genetic causes of human skeletal dysplasias that affect the growth and strength of the skeleton. Most recently, he discovered new causes of brittle bone disease in children. In so doing, he is developing new approaches for diagnosing and treating these disorders. In the area of metabolic disease, he is developing new treatments for maple syrup urine disease and urea cycle disorders that are now identified at birth by comprehensive newborn screening. Early diagnosis and treatment will be essential for preventing future complications that may lead to brain injury and death. Dr. Lee has received local and national recognition including induction into the Institute of Medicine (IOM), Texas Academy of Medicine, Engineering, Science, and Technology (TAMEST), Association of American Physicians (AAP), the American Society for Clinical Investigation (ASCI), the TAMEST Peter O’Donnell Award in Medicine, the Society for Pediatrics Reserch (SPR) E. Meade Johnson Award for Pediatrics Research, the Michael E. DeBakey Excellence in Research Award, the American Philosophical Society’s (APS) Judson Darland Prize for Patient-Oriented Clinical Investigation, and Best Doctors in America.

Dr. Lee’s research mission is to elucidate developmental and biochemical pathways that regulate organogenesis and postnatal homeostasis, and to translate these discoveries into new diagnostic and therapeutic approaches. By studying Mendelian genetic diseases, he has elucidated physiological mechanisms that can also contribute to common, complex diseases (osteoarthritis, osteoporosis, and hypertension) as well as cancer (osteosarcoma). His program spans from basic mechanistic studies to clinical longitudinal and interventional trials in two areas: Structural birth defects with focus on the skeletal dysplasias and inborn errors of metabolism (IEM) with focus on the urea cycle disorders (UCD). By identifying targets from these rare diseases, he has developed therapies that may be translated in humans in proof of

principle studies and eventually for future commercialization and wider application.

Anne Maitland, MD, PhD Anne Maitland, M.D., Ph.D. is an Asst. Professor at the Icahn School of Medicine at Mount Sinai, in the Departments of Otolaryngology and Medicine- Clinical Immunology Division. She also is the medical director for Comprehensive Allergy & Asthma Care as well as the upcoming Mast Cell Activation Center of New York. Her pamphlet, Mast Cells Gone Wild!, a guide - the diagnosis and treatment on Mast Cell Activation Disorder will be available this July.

After earning her doctorates in medicine and philosophy at the University of Pennsylvania School of Medicine, Dr. Maitland completed her Internal Medicine Residency at Brigham & Women's Hospital, Boston, MA, and her clinical immunology training at Mount Sinai Hospital. She is board certified in Allergy & Clinical Immunology.

Dr. Maitland has been recognized for her clinical excellence at Mount Sinai Hospital and as a NY Times Superdoctors, 2011-2014. She now focuses on the diagnosis and treatment of primary immunodeficiency and hypersensitivity disorders, including the emerging spectrum of mast cell activation disorders.

Troy Mason Tricia McDaniel John Mitakides, DDS, FAACP John Mitakides D.D.S, DAACP. Graduate 1974, Ohio State College of Dentistry, Diplomate of the American Academy of Craniofacial Pain. Member of EDNF PAN. General Dental practice with concentration in TMJ, EDS, and Atypical Myofascial Pain related to Cranial and Cervical Referral sites.

Shaine Morris, MD, MPH Dr. Morris is a Pediatric Cardiologist at Texas Children’s Hospital. She did her undergraduate at Stanford University, medical school at UT Southwestern in Dallas, Pediatrics residency at Boston Children’s Hospital/Harvard, and pediatric cardiology training at both Boston and Texas Children’s Hospital. She also earned her Master’s in Public Health from Harvard. She has a special interest in imaging the heart and in cardiovascular genetics. Clinically, she follows patients with vascular EDS, Marfan Syndrome, Turner Syndrome, and other genetic conditions in the TCH Cardiovascular genetics clinic. She also is involved in multiple research projects both locally and nationally that try to determine how to identify who is high risk for cardiac events and how to improve outcomes in young patients with genetic conditions.

Diane Murrell Kendra Neilsen Myles Derek Neilson, MD Derek Neilson grew up in Portland, OR as a hiker and skier. He attended the Johns Hopkins University in Baltimore, MD, majoring in biology, and graduated with honors. He went back to Portland to study medicine at Oregon Health Sciences University and finally landed closer to the middle of the country when he became one the first residents in a combined pediatrics and genetics program in Cleveland, OH. After his residency at Rainbow Babies and Children’s Hospital, Dr. Neilson stayed on at the affiliated program at Case Western Reserve University and University Hospitals of Cleveland.

There he developed a research program to identify genes associated with a rare and deadly neurologic disorder that is triggered by viral infections.

In 2008, Dr. Neilson took a position as Assistant Professor at Cincinnati Children’s Hospital Medical Center, where he has continued his research. In 2012, Dr. Neilson took on a leadership role in the Connective Tissue Clinic. Noting the large gaps in the medical scientific literature, he has been developing a clinical and molecular research program for Ehlers Danlos Hypermobile Type and hypermobile disorders.

Donna Olivero, PT

Jonathan Parr, PT Jonathan earned a Bachelor’s degree in athletic training from Texas State University and a Master’s Degree in Physical Therapy from the University of Texas Medical Branch. He holds a Mastery Certification in Manual Techniques and is certified in motor control neurological approaches with a specialization in brain injury. Jonathan has worked extensively with the diagnosis and treatment of EDS, Dysautonomia, Chiari Malformation, and POTS. He has a patent pending on a revolutionary ambulatory therapeutic device for improving gait efficiency and has developed a unique holistic approach combining whole body treatment with functional movements to individualize and treat the needs of his patients.

Alan Pocinki, MD Manu Sood, MD Brad Tinkle, MD, PhD Shani Weber Shani Weber, M.S., 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 the 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 and author of the Stanford Scopes article, "The Day My Doctor Thanked Me".