Lili Claire Foundation


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Los Angeles Family Resource Center

The Lili Claire - UCLA Family Resource Center | Programs & Services | Medical Team | Resources | Contact Info

The Lili Claire – UCLA Family Resource Center


***Calendar of Events coming soon.....


Experts at UCLA estimate that one in every 20,000 people live with Williams syndrome, a neurogenetic birth defect that affects males and females alike and occurs in all ethnic groups and nationalities. While science diligently works towards developing better intervention approaches to genetic disorders, individuals and families living with these disorders must focus on the realities of the present, as they learn to make their way in a world that is not accustomed to accommodating and understanding persons with disabilities.

The Lili Claire-UCLA Family Resource Center supports these families by providing them with the resources and assistance they seek today. Developed in partnership with UCLA's Medical Center and Neuropsychiatric Institute, the Lili Claire Family Resource Center enlists the most gifted doctors, researchers and social workers in the nation to offer a unique blend of medical, psychosocial and social services for individuals living with Williams syndrome and other neurogenetic disorders and their families. The Lili Claire-UCLA Family Resource Center is a source of medical and psychological expertise for this community and within both the greater Los Angeles area and around the world. The Center's primary focus is to promote the overall well-being of the family through medical and psychosocial interventions and to increase community awareness of neurogenetic disorders through involvement, support, education and information exchange, and to provide emotional support and resources to bereaved families who have lost their children.

Since opening in 2001, the Lili Claire-UCLA Family Resource Center has served a caseload of over 1000 families, both on a one-time and ongoing basis. The Family Resource Center is dedicated to the diagnosis and treatment of individuals with neurogenetic birth defects and to providing counseling and support for the families who love them.

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Programs and Services

This Lili Claire Foundation Family Resource Center has mobilized resources at UCLA and the Los Angeles community to provide children living with neurogenetic disorders and their families the following programs and services:

Medical Services
Utilizing UCLA's medical expertise and resources, the Center provides diagnostic evaluations, genetic counseling, treatment, medical advice and consultation for individuals with neurogenetic disorders, and performs life-saving medial procedures, as needed.

Psychological Counseling
The Center provides family counseling referrals to help parents and families of people with neurogenetic birth defects cope with the emotional difficulties of caring for a family member with disabilities.

Social Services
The center facilitates parent and professional collaboration and interagency coordination by providing clients and guests of the Family Resource Center with free, unrestricted access to our Information Library and support to search for financial, educational, legal and other advice and resources, with the help of the Center’s staff. Families can also access medical information and journals, as well as social services in their own communities. The library's electronic database also helps simplify the Center's referral process by providing a searchable database by agency, location, or service.

Family Outreach
The Center's Parent Coordinator develops creative and meaningful ways to encourage families to become involved with the Foundation’s activities, workshops and seminars. The coordinator also organizes family-centered events, such as social activities and support groups.

***UCLA Parent Workshop series:

"Beyond the Basic IEP:  What You Don't Know CAN Hurt You "

Join us on Saturday, June 14th from 11am-1pm 

Marisa Leif Conference Room at UCLA

300 Medical Plaza, 3rd Floor, Los Angeles, CA 90095

**Click here for more information and to RSVP

Pre-registration is required as seating is limited. 

 

Community Outreach
In coordination with the Lili Claire Foundation, the Center identifies and outreaches to families that may benefit from its services and raises awareness of and support for neurogenetic disorders among medical, business and community leaders. Contact the Program Coordinator to be added to the mailing list as a parent or vendor in our database.

Medical and Behavioral Genetics Clinics
Behavioral Genetics Clinic
This innovative clinic aims to meet the unique treatment needs of children and adults with Down syndrome, Prader-Willi syndrome, Williams syndrome, and other genetic disorders associated with developmental disabilities. The clinic focuses primarily on behavioral and psychiatric concerns in persons with these disorders, but it is a priority of the clinic to ensure that children and their families receive optimal educational, vocational, recreational, medical, and family support interventions.

Available Services:

  • Comprehensive Psychiatric Evaluations
  • Psychopharmacological Intervention and Medication Management
  • Psychosocial Intervention
  • Nutritional Assessments
  • Educational Consultation Services
  • Research Participant Opportunities
  • Training Opportunities for young professionals in psychiatry, psychology, genetic counseling, special education, social work and other disciplines

Medical Genetic Services
The Division of Medical Genetics at the UCLA Center for Health Services provides comprehensive genetic counseling and diagnostic services to patients and families with a history of or at risk for, the following: birth defects, developmental disabilities or hereditary disorders. Pediatric, adult, and prenatal diagnostic evaluations are carried out by a team of medical geneticists, genetic counselors, nurses, nutritionists, and social workers who contribute to the total care of the patient and his/her family.

Medical Genetic Services:

  • Medical Genetics Clinic
  • Metabolic Clinic
  • High Risk Population
  • Genetic Screening
  • Prenatal Diagnosis Center
  • Neurogenetics Clinic
  • Identity Testing
  • Cytogenetics Laboratory
  • Predictive Testing for Neurologic Disorders
  • Predisposition Testing for Cancer

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Meet our Medical Team

Dr. Cederbaum with a patient

Stephen Cederbaum, M.D., Lili Claire – UCLA Family Resource Center, Medical Director
Stephen Cederbaum, M.D.: Professor of Psychiatry, Pediatrics and Human Genetics, Chief, Division of Genetics, Emeritus in the Department of Pediatrics and Head of Clinical Services in the Division. In this latter role, he is responsible for the clinical evaluation and care of patients with all genetic conditions. Dr. Cederbaum has been studying and caring for patients with genetic disorders for more than 30 years and is a prominent practitioner and investigator in the field. His special clinical and laboratory focus is disorders of the urea cycle and is a past-president of the Society for Inherited Metabolic Disorders. He is involved in a national consortium of physicians and scientists who wish to expand and rationalize the treatments for these disorders using standard approaches, specialized medications and ultimately gene therapy. He is the Medical Director of the Lili Claire Family Resource Center at UCLA.

Dr. Cederbaum lives in Santa Monica, California, is married and has two grown children. He likes to travel, read and is a passionate lover of opera.

Bhavik G, Shah, M.D., Lili Claire – UCLA Family Resource Center, Associate Professor of Psychiatry
Dr. Bhavik G. Shah currently works with The Lili Claire Foundation as Associate Professor of Psychiatry. He received his B.S. and M.D. at the University of Iowa and completed his Residency, Internship, and Fellowship at UCLA specializing in Child and Adolescent Psychiatry. Dr. Shah has spent his adult career working at the UCLA Neuropsychiatric Hospital holding positions such as: Chief Fellow, Visiting Assistant Professor, and Assistant Clinical Professor. He is currently the Director of Child Psychiatry Inpatient Services, Associate Director of Behavioral Genetic Clinics, Psychiatry Discipline Coordinator in the UAP Clinic, Psychiatric Consultant, Medical Director and Associate Clinical Professor.

Dr. Shah is a member of the Southern California Psychiatric Society and the American Academy of Child and Adolescent Psychiatry. Dr. Shah has given various lectures throughout Southern California on Neuropsychiatry specifically in case studies, medications, behavioral issues, and innovative approaches, and has also been published in the Journal of the American Academy of Child and Adolescent Psychiatry, American Journal of Psychiatry, The American Journal of Drug and Alcohol Abuse, and numerous other publications.

Naghmeh Dorrani, M.S., C.G.C., Lili Claire – UCLA Family Resource Center, Program Director
Naghmeh Dorrani, M.S., C.G.C.: Certified Genetic Counselor in the Departments of Pediatrics, Division of Genetics, and Psychiatry, Program Director of UCLA – Lili Claire Family Resource Center. Ms. Dorrani coordinates the medical and behavioral genetics clinics at UCLA, provides genetic counseling to patients and supervises the UCLA – Lili Claire Family Resource Center. Additionally, she has been coordinating studies in areas of neurogenetics and inborn errors of metabolism. She is also an instructor in the Genetic Counseling Graduate Program at the California State University, Northridge.


Melon Haile, BA – Clinic Coordinator

Bethany Stark, MA – Parent Coordinator

Hillary Zebberman, MSW – Social Worker

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Resources:

Downloads:

  • Medical Intake Forms
  • Endowment Information

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Contact Us

The Lili Claire-UCLA Family Resource Center
300 UCLA Medical Plaza, Suite 1200
Los Angeles, CA 90095
Phone:        (310) 794-9516
Fax:             (310) 794-1143
Email:         mhaile@mednet.ucla.edu

Hours:
We are open Monday through Friday, from 9:00 AM to 5:00 PM, except for holidays.
**Please call in advance to make an appointment with our Clinic Coordinator, Melon Haile.
The warm line message service is available 24 hours a day, 7 days a week.

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The Lili Claire Foundation • 2800 28th Street, Suite 160, Santa Monica, California, 90405 •
Phone • 310.396.4355 • Fax • 310.396.2127 • Email staff@liliclairefoundation.org •
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