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 - Neurologist

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

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

Dr. Anna Haddal. Patients are referred 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.

Vijaya Surampudi, MD - Adult Endocrine, Diabetes, Dietitian

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).

Anthony Scaduto, MD & William Oppenheim, MD - Orthopedic Surgeons

Dr. Anthony Scaduto or Dr. William Oppenheim (associated with clinic since 2010, now transitioning to retirement) Referrals are made for scoliosis based on yearly exam and selective scoliosis imaging (when abnormality is evident on exam). Surgery is performed by Dr. Scaduto in RR/Mattel Children's hospital for patients with cardiac or pulmonary compromise or at Santa Monica/Orthopedic Hospital for those who are at low risk. Serial casting or tendon release (Dr. Oppenheim) are performed as needed. Surgery may be performed at either hospital, serial casting is at Santa Monica//Orthopedic Hospital.

Kate Perry, MD - Bone Health

Dr. Kate Perry is a nephrologist with extensive training in bone disease. Patients are referred to a monthly bone clinic (staffed by a dedicated nurse and additional physicians) include those with fractures, abnormal DEXA, or bone pain and those who require more specialized testing (such as QCT) or management of bisphosphonate IV infusions. Oral bisphosphonates may be prescribed by DMD clinic physicians in consultation with Dr. Perry. Routine screening includes yearly DEXA scans and vitamin D levels are followed and optimized.

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). 2 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.

Jenna Gewirtz, RN - Nurse Coordinator

Jenna Gewirtz, RN is the dedicated nurse who assists in coordinating the multidisciplinary care and tests for the DMD patients. Jenna has been in the role of office coordinator for 3 years. She is responsible for organizing and scheduling the neuromuscular clinics. She is designated as the point person to patients and families during and between visits. In addition, she organizes the monthly neuromuscular team meetings. Jenna is available by cell phone to all the clinic families 7 days a week and triages calls and patient requests to the physicians and other care providers of the clinic. She also assists patients in scheduling at UCLA.

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. Chin - Physical Therapist

Susan Chin. She 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 6 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. She is very involved with updating the CDMD website with new external resources for the Duchenne community.

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.

Denise Matsuyama - Child Life Specialist

Denise Matsuyama is our Child Life Specialist who helps patients and families meet the developmental needs of the child and to cope with the medical experiences of being in clinic and having a serious medical diagnosis. A Child Life Specialist supports children and families through developmentally appropriate education, play, preparation for medical procedures, and creation of coping strategies to deal with potential sources of stress. Denise is very involved with corn coordinating outside clinic activities for the Duchenne families. She is constantly offering free tickets to baseball games and other exciting activities for our patients.

Raeesa Hyder - MDA Representative

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