Perry Shieh, PhD, MD - Neurologist

Dr. Shieh has specialized training in all neuromuscular disorders, both child and adult. He is responsible for the training of neuromuscular disease fellows and neurology residents. He has been very successful in hosting many clinical trials at UCLA (see 'clinical trials' section). He has expertise in diagnostic methods (EMG and muscle biopsy) pertinent to muscular dystrophy diagnosis and care.

Payam Soltanzadeh. MD - Neurologist

Dr. Payam Soltanzadeh is an Assistant Clinical Professor of Neurology who specializes in neuromuscular disorders; including Duchenne and Becker Muscular Dystrophy. Dr. Soltanzadeh treats both adult and pediatric patients with neuromuscular disorders and currently treats B/DMD patients at our “Teen/Adult” clinic, held on the 3rd Wednesday of every month. Dr. Soltanzadeh is an expert in myotonic dystrophies types 1 and 2, inclusion body myopathies including GNE myopathy and sporadic IBM, limb girdle muscular dystrophies, statin myopathies including the statin-triggered autoimmune necrotizing myopathy (HMG CR Ab associated myositis), myositis, dystrophinopathies, myasthenia gravis, amyotrophic lateral sclerosis, and neuropathies.

Dr. Soltanzadeh received his M.D. from Tehran University of Medical Sciences, where his thesis focused on hereditary inclusion body myopathy (GNE myopathy). As a Postdoctoral Fellow at the Institute of Myology, PitiéSalpêtrière Hospital in Paris he conducted research on the molecular characterization of congenital myasthenic syndromes due to MUSK mutations. Subsequently, Dr. Soltanzadeh collaborated on a large multicenter research with Dr. Kevin Flanigan at the University of Utah, where he participated in the United Dystrophinopathy Project, studying Genotype-phenotype correlations in Duchenne and Becker muscular dystrophies, dystrophinopathic cardiomyopathy, and manifesting carriers of Duchenne.

Dr. Soltanzadeh completed his Neurology residency at the University Of Maryland School Of Medicine and his Clinical Neurophysiology fellowship (Neuromuscular Track) at the University of Utah. After finishing his fellowship, he served as a faculty staff at Cleveland Clinic Neuromuscular Center in Cleveland Ohio before joining UCLA Department of Neurology.

Nancy Halnon, MD - Cardiologist

Dr. Nancy Halnon is a physician specializing in pediatric heart failure and cardiomyopathy that will closely monitor heart function, and make early intervention to preserve and optimize heart function. Dr. Halnon sees patients in NM comprehensive clinic, as well as at scheduled outpatient appointments in pediatric cardiology. Echocardiograms or CMR are ordered routinely depending on the child's age and ability. Medications (ACE inhibitors, aldosterone inhibitors and beta blockers) are routinely offered with evidence of dysfunction. Early initiation of ACEi (pre-emptively) is offered and encouraged. Dr. Halnon is UCLA PI for a multicenter clinical trial of mineralocorticoid receptor antagonism (eplerenone vs. spironolactone) and collaborates with CMR investigators for additional clinical research studies focusing on DMD cardiomyopathy. Transition to adult care is actively managed (initially co-managed, then Dr. Halnon provides consultation as needed) with Dr. Daniel Cruz in the Cardiomyopathy clinic at UCLA. ICD are not routinely provided during childhood, but are recommended once typical ICD criteria for adult cardiomyopathy patients are met. Dr. Cruz also sees dystrophin mutation carriers (mothers or relatives of clinic patients).

Daniel Cruz, Ph.D. - Cardiologist (Adult)

Transition to adult care is actively managed (initially co-managed, then Dr. Halnon provides consultation as needed) with Dr. Daniel Cruz in the Cardiomyopathy clinic at UCLA. ICD are not routinely provided during childhood, but are recommended once typical ICD criteria for adult cardiomyopathy patients are met. Dr. Cruz also sees dystrophin mutation carriers (mothers or relatives of clinic patients).

Anna Haddal, MD - Endocrinologist

Patients are referred to D. Haddal to be evaluated for growth hormone deficiency based on request or documented short stature. Hemoglobin A1C is routinely monitored in patients on steroids and if abnormal, patients are referred for diabetic management. Patients are screened for pubertal delay by clinic pediatricians and referred for testosterone therapy when needed.

Douglas Li, MD & Ravi Aysola, MD - Pulmonologist

Dr. Douglas Li (Pediatrics) and Dr. Ravi Aysola (teen/young adult). Both see patients by internal referrals to Westwood or Santa Monica clinics. Full clinical PFT including spirometry is obtained yearly for all clinic patients as soon as they are able to cooperate. Referral is made based on results or symptoms. Cough Assist is encouraged and ordered as soon when PFT results indicate FVC below 80% or other evidence of ventilatory muscle weakness or weak cough. Sleep studies are also ordered as soon as indicated (typically with symptoms or when late ambulatory).

Rachel Thompson, MD - Orthopedic Surgeon

Rachel Thompson is a Chicago native, who attended medical school at the George Washington University in Washington, D.C., and completed her residency in orthopaedic surgery at Northwestern University in Chicago, IL. She completed her first fellowship in pediatric orthopaedics and scoliosis at Texas Scottish Rite Hospital for Children in Dallas, TX and her second in neuromuscular orthopaedics at Nemours A.I. DuPont Hospital for Children in Wilmington, DE. She additionally completed a travelling fellowship in adolescent and adult hip dysplasia in Aarhus, Denmark before joining the faculty at UCLA.

Her primary area of practice is pediatric orthopaedics, with a specialization in neuromuscular orthopaedics. She is on staff at Orthopaedic Institute for Children and UCLA, as an assistant clinical professor-in-residence in the department of orthopaedics.

Dr. Thompson has published clinical peer-reviewed journal articles and textbook chapters in general orthopaedics, pediatric orthopaedics and neuromuscular orthopaedics. She has presented her research both nationally and internationally. Dr. Thompson's research in a broad area of topics has led to receiving research awards from the American Academy of Cerebral Palsy and Developmental Medicine, the American Academy of Orthopaedic Surgeons, the Orthopaedic Research Society, the Orthopaedic Trauma Association and the Mid-America Orthopaedic Association.

Isidro B. Salusky, MD

Isidro B. Salusky, MD is Distinguished Professor of Pediatrics at the David Geffen School of Medicine at UCLA, Chief of Pediatric Nephrology and Director of the Pediatric Dialysis Program. In 1996, Dr. Salusky established a specific clinic for the assessment of Bone and Mineral metabolism in children with different genetic and systemic disorders.

Dr. Salusky received his MD degree from National University of Buenos Aires, Buenos Aires, Argentina, and completed pediatric residency training at Dr. Pedro de Elizalde Hospital Pediatrics, Buenos Aires, Argentina. Thereafter, Dr. Salusky completed his fellowship in Pediatric Nephrology from Hospital des Enfants Malades, Paris, France and Pediatric Nephrology, at UCLA 1982 and stayed on as faculty. He is Board Certified in Pediatric Nephrology.

Dr. Salusky is a international recognized leader in the field of bone and mineral metabolism in children with CKD, his expertise is recognized by national and international societies as a regular invited speaker. In addition, Dr. Salusky, co-chaired the development of guidelines for the diagnosis and treatment of the nutritional and mineral abnormalities in children with CKD. He is member of the American Society of Nephrology, Society for Pediatric Research, American Society of Bone and Mineral Research and International Society of Pediatric Nephrology (IPNA). At IPNA, Dr. Salusky has multiple roles as Councilor, Treasury and President. Dr. Salusky is committed to the training of the next generation of physicians-scientists in Pediatric Nephrology.

Stanley F. Nelson, MD - Pediatric Geneticist

Dr. Stanley Nelson is a physician specializing in pediatric genetic care and planning. Patient genetic testing is ordered and results discussed for patients in DMD clinic. Family member testing is frequently coordinated through additional genetic counsellors familiar with DMD in the Department of Pediatrics (Naghmeh Dorrani, CGC). Many research studies on the genetics of DMD are being conducted by Dr. Nelson. All patients are encouraged to participate in research studies. The clinic has implemented a broad consent document to allow ongoing research and aggregation of data from all patients seen with DBMD, a research muscle biopsy procedure, RNA based muscle biopsy diagnostics, and a genetic modifier study. Dr. Nelson serves to coordinate activities across the many activities of the Center for Duchenne Muscular Dystrophy and establish clinic priorities.

Keith E. Vinnecour, C.P.O. (E). - Orthotist

Keith is an Orthotist with more than 40 years of experience with neuromuscular diseases. He is a retired outside vendor, who has been a member of the clinic since the beginning. Keith, working in conjunction with the Physical Therapist, performs an exam along with doing gait analysis for each patient and assists Dr. Shieh in writing prescriptions and providing supporting Orthotic notes to ensure that the most up to date and effective devices are being prescribed and provided. He also sees the devises after they have been provided to ensure they are optimum for each patient, fitting comfortably and functioning as originally requested. Keith works with the families to educate them on the proper usage of the devices, problem solving advice and assistance as to when orthoses need to be repaired or replaced, due to wear or growth. And finally, Keith tries to connect the families that do not have previous providers with providers who have advanced knowledge and expertise with Orthoses for patients with neuromuscular diseases and are geographically convenient to where the patients are living.

Susan W. Liu - Physical Therapist

Susan Liu is the health care professional trained to perform and teach exercises that can help maintain muscle function and prevent joint stiffening. She has received special training in measurement and stretching techniques for DMD care. She performs NSAA and records timed function tests. Clinical trial patients are seen differently from clinic in the CDMD Clinical Trials Assessment Group in the Rehabilitation Building. Clinical trial outcomes, in some instances, may be used clinically as well. There is also availability for Duchenne patients, to a warm water pool program at UCLA that was initiated between the Department of Recreation and the PT services of the CDMD.

Hillary Zebberman, MSW - Social Worker

Hillary Zebberman is a Licensed Clinical Social Worker who has been with our clinic for the past 8 years. In addition to years of Medical Social Work experience she has a background working with children and families in the area of developmental disabilities. She provides psychosocial assessment to each patient and a treatment plan based on the individual and family needs. She provides emotional support, resource and referral based on each patient and family needs. Hillary interfaces with pediatricians, mental health professionals, school district, and resources in the community, all in an effort to educate about our DMD population and to advocate for the needed resources. She provides counseling to help patient and family understand and solve problems pertaining to current health and life condition and to help patients and families make informed decisions about their health care. She also tries to connect families into community resources. Hillary works with the schools to develop IEPs and assists with drafting letters for insurance companies.

Kevin Phillips - Assistive Technology Specialist

Kevin Phillips is employed by an outside contractor. He is new to our clinic and extremely useful. Kevin brings 20 years of experience with the specialty equipment patients with MD require for mobility, transportation, communication, computer and home access. UCLA does not employ PM&R providers. Kevin is primarily responsible for all assistive technology suggestions and recommendations. He offers guidance to our families on how to improve existing equipment, as well as recommendations for new equipment that can help the families enjoy active lifestyles. He Is very helpful in assisting patients get the proper insurance coverage for the best equipment available. He is very caring, and a tremendous patient advocate.

Elisabeth "Beth" McGee, MSNe - Nurse Specialist

Elisabeth "Beth" McGee, MSN, is a pediatric clinical nurse specialist. She is the research nurse for the California Center for Rare Diseases. Beth has more than 13 years of experience with pediatrics, with almost half of that time directly involved with clinical trials. She assisted with some of the first Duchenne exon skipping trials at UCLA. She currently assists with muscular dystrophy trials conducted by Dr Nelson and Dr Miceli. She is also responsible for organizing longitudinal patient information in our secure database. Beth also coordinates family member genetic testing. In addition to serving CDMD clinic, Beth works for all rare disease patients at UCLA. She helps identify and consent patients to applicable trials and research opportunities.

Emilie Douine - Genetic Counselor

Emilie Douine is a trained genetic counselor working in Dr Stanley Nelson laboratory. She is the liaison between laboratories, sponsor, physicians and clinical and research collaborators through the Undiagnosed Diseases Network (UDN), the Clinical Genomics Center, and the Institute for Precision Health at UCLA. She is currently the Clinical research coordinator for 4 ongoing clinical trials, and the Study coordinator for 7 ongoing clinical research studies.