The UCLA Multidisciplinary Neuromuscular Clinic was established in 2009-10. Our pediatric clinic meets twice a month. The majority of patients seen are B/DMD. Additional patients with SMA, myotonic dystrophy, congenital muscular dystrophy are seen on select clinic days. The clinic can accommodate 12 patients in a day for multidisciplinary visits. Due to demand, some clinics have more patients especially those who do not need to see all team members on that day. Most B/DMD patients are seen 2 times per year for routine care and more frequently when needed. The appointments are generally scheduled months in advance, but patients can be scheduled on short notice. Physicians available in the multidisciplinary clinic include medical specialists (neurology, genetics, cardiology) - board certified pediatricians, neurologists, neurology fellows (4 per year who rotate in clinic- some fellows are pediatric neurologists or have specialization in physical medicine and rehabilitation (PM&R) in addition to specialty training in neuromuscular disease), and pediatric and adult neurology residents. The clinic is able to serve both adult and pediatric patients and Dr. Shieh is fully credentialed to provide specialist services to both children and adults. Older patients who need fewer of the child related services (i.e. Child-life specialist) are seen in multidisciplinary clinic or on another day depending on insurance coverage and needs. Doctors Nelson and Halnon are both board certified pediatricians who can evaluate for disease or treatment related complications and manage steroid dependent patients in conjunction with primary care physicians. When requested, referrals are made for primary care providers in the pediatric/adult medicine practice at UCLA Santa Monica so that some of the medical home needs can be addressed within a Medi-cal managed care plan at UCLA. Some patients have limited coverage for visits to UCLA- Therefore, some consultations and services are provided at DMD clinic visits for free to the patients (supported by philanthropy- see community engagement below).

Clinic Visits

Multidisciplinary care is offered and coordinated through the pediatric clinic- Most routine testing is scheduled prior to or on the day of the clinic visit. Some parents prefer to have all the testing completed in one day, while others may prefer to spread it out over time. The clinic visit is typically a long visit. We offer drinks and snacks to patients and families. Our child life specialist goes from room to room offering activities (coloring, videos, and PlayStation) for the patients (or accompanying siblings). Each patient typically sees all team members with each visit, although the duration of each provider visit will vary depending on the needs.

At the end of the clinic, the entire team meets for a post clinic conference. Jenna conducts this meeting. During this conference each patient case is presented and then discussed by all team members. Nurse Jenna Gewirtz takes notes and follows up with each patient/family as directed. During this time all suggestions and concerns are openly discussed and medical, psychosocial, and DME needs are discussed.

Patients receive an after visit summary at the time of the visit. After all encounters are completed (typically a week after the clinic visit) all clinic notes are routed to the PCP and family. Some parents prefer the notes emailed electronically. Patients (or proxies) have access to notes, labs, and appointments in My Chart (patient EMR portal).

Clinic Staff

Perry Shieh, PhD, MD

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.
Soltanzadeh

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

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).
Dan Cruz, Ph.D.

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 Pawlikowska-Haddal, MD

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.
heart picture

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

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.

Isidoro Salusky

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

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

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.
physical therapy image

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

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.
wheelchair picture

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 McGee

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

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.

Information about your visit

We understand clinic visits can be hard for patients and their parents, especially for our younger patients. We now have a dedicated Child Life specialist in clinic to support you and your child during your clinic visits. This person can provide entertainment, distraction, and emotional support if you choose. We have found that parents sometimes need to speak privately with the specialists, and this Child Life person can provide distraction and play time for your child while you speak freely to your child's medical team. 

While we keep some snacks and juice boxes on hand and do our best to make your visit as comfortable as possible, we suggest bringing a favorite snack and toy for your child to keep him or her satisfied while in clinic.

Dining and Food Options

We understand that your visit can be lengthy. The Edward D. and Anna Mitchell Family Foundation Dining Commons is located on Level 1 of the Ronald Regan UCLA Medical Center and is open Monday through Friday, 6:30 a.m. to 10 p.m., and on weekends and holidays from 7:30 a.m. to 8 p.m. This is a short-walk from the clinic.

If you are up for a bit longer of a stroll and to visit the UCLA Campus, we recommend the Terrace Food Court in the Ackerman Student Union

Lodging Options

We highly recommend the UCLA Tiverton House if you require any lodging. It is a 100 room hotel designed to meet the needs of Ronald Reagan UCLA Medical Center patients and their families in Westwood. Making it possible to be nearby when support and closeness are needed most.

UCLA Tiverton House
(310) 794-0151
900 Tiverton Avenue
Los Angeles, CA 90024-3013
Directions

 

The Pediatric Neuromuscular Clinic at UCLA is held every first and third Wednesday of the month at 300 Medical Plaza Suite B200. 

Schedule/Re-Schedule Appointments:
Call (310) 794-1195

Urgent Questions:
Call the UCLA Page Operator at (310) 825-6301 and
ask to speak to any of the following physicians
Dr. Perry Shieh, Dr. Nancy Halnon, Dr. Stanley Nelson
(For a return call within 1 hour)

Emergency: CALL 911

From the San Diego Freeway (405):
From the north, exit Wilshire East; or from the south, exit Wilshire Westwood. At the third traffic light, turn left on Westwood Blvd.  Proceed across Le Conte Avenue and at the next light, Medical Plaza Drive, turn left and follow the ramp down to the parking lot below. Additional entrance is found north of Le Conte Avenue on Gayley Avenue, two blocks west of Westwood Plaza.

From Los Angeles International Airport (LAX):
Take the San Diego Freeway northbound to Wilshire Boulevard east, and continue as described above.

From the East via the 10 (Santa Monica Freeway):
Take 10 (Santa Monica Fwy) East to 405 (San Diego Fwy) North, and exit on Wilshire Boulevard east. Continue as described above.

SHORT-TERM PARKING

Daily Single Entry: Parking at Medical Plaza is available for patients visiting the outpatient clinics. Parking fee is a flat rate of $12. Please pay at the pay stations located near garage elevators. (Rates subject to change without notice.)

Daily Single Entry w/Disabled Person's Placard/License Plate: There is a $5 fee for parking if the driver of the vehicle has a valid handicap placard in his or her name. Please ensure that your vehicle displays a valid parking permit at all times.
If you are parking on 200 or 300 Medical Plaza, pay attendant at exit kiosks during business hours (M-F 7am-9pm) or at Ronald Reagan UCLA Medical Center Level P parking cashier 24 hours, 7 days a week. If you are parking on Level 1 of 100 Medical Plaza, please pay on entrance at pay station located near garage elevators.

EXTENDED PARKING
Should you or your visitors require parking over an extended period of time, you may want to consider purchasing a consecutive-day discounted parking permit.  For more information, please contact Patient Affairs office at (310) 267-9113 or open the parking information sheet for complete information. Patient Affairs is located on the first floor of 200 Medical Plaza (Peter Morton Medical Building) in Suite 131; hours are 8:00 a.m. to 5:00 p.m. Monday through Friday.

Find complete information on parking locations and rates by clicking here and here.