Resource Centers: Williams Syndrome Resources: Down Syndrome Resources: Autism Resources: |
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Family Resource Centers | Conditions | Programs & Services
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Family Resources The Lili Claire Foundation collaborates with renowned institutions such as the University of California, Los Angeles and the University of Nevada School of Medicine to provide a dynamic vision of community educational outreach, a unique blend of medical and academic expertise, along with the foundation’s holistic comprehensive wellness resources.
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Conditions Williams Syndrome | Down Syndrome | Autism Williams Syndrome While the severity of symptoms varies among patients, common physical characteristics of Williams syndrome include an excessively impulsive and outgoing personality, intellectual developmental delay and learning disabilities, mental retardation or attention deficit disorder. However, older children with Williams Syndrome often demonstrate intellectual "strengths," along with these developmental "weaknesses." People with Williams Syndrome display some highly developed intellectual areas such as verbal acuity, which often make them wonderful storytellers. They often have a striking musical ability, relatively good reading and phonics skills, and extremely strong social skills (where they may surpass the abilities of a child with normal abilities and intellect). Unfortunately, because of their remarkable verbal and social abilities, educators are often misled into thinking that these children have better reasoning skills than they actually possess, and in many cases these children do not get the academic support they need. Research indicates that there are other genetic inconsistencies that contribute to Williams Syndrome. Extensive research still remains to be done to identify those genetic inconsistencies, and to develop prenatal testing in order to identify potential Williams Syndrome candidates. Read More... -Back to Conditions- -Back to Family Resources- 
Down Syndrome -Back to Conditions- -Back to Family Resources- Autism What are some common signs of autism? The hallmark feature of autism is impaired social interaction. Parents are usually the first to notice symptoms of autism in their child. As early as infancy, a baby with autism may be unresponsive to people or focus intently on one item to the exclusion of others for long periods of time. A child with autism may appear to develop normally and then withdraw and become indifferent to social engagement. Children with autism may fail to respond to their name and often avoid eye contact with other people. They have difficulty interpreting what others are thinking or feeling because they can't understand social cues, such as tone of voice or facial expressions, and don't watch other people's faces for clues about appropriate behavior. They lack empathy. Many children with autism engage in repetitive movements such as rocking and twirling, or in self-abusive behavior such as biting or head-banging. They also tend to start speaking later than other children and may refer to themselves by name instead of "I" or "me." Children with autism don't know how to play interactively with other children. Some speak in a sing-song voice about a narrow range of favorite topics, with little regard for the interests of the person to whom they are speaking. Many children with autism have a reduced sensitivity to pain, but are abnormally sensitive to sound, touch, or other sensory stimulation. These unusual reactions may contribute to behavioral symptoms such as a resistance to being cuddled or hugged. Children with autism appear to have a higher than normal risk for certain co-existing conditions, including fragile X syndrome (which causes mental retardation), tuberous sclerosis (in which tumors grow on the brain), epileptic seizures, Tourette syndrome, learning disabilities, and attention deficit disorder. For reasons that are still unclear, about 20 to 30 percent of children with autism develop epilepsy by the time they reach adulthood. While people with schizophrenia may show some autistic-like behavior, their symptoms usually do not appear until the late teens or early adulthood. Most people with schizophrenia also have hallucinations and delusions, which are not found in autism. Read More... -Back to Conditions- -Back to Family Resources- Programs & Services Medical Outreach Also, in collaboration with UCLA's Neuropsychiatric Institute and the Gift of Life Foundation, the Lili Claire Foundation sets aside special funds to provide two heart surgeries per year to low-income children worldwide living with Williams Syndrome. In order to qualify for a heart surgery, families must provide proof of a positive diagnosis for Williams Syndrome, or undergo diagnostic exam coordinated by the foundation.
The HeartBeats Music Camp Program takes place annually to provide musical training and exploration to children and young adults living with neurogenetic disorders such as Williams Syndrome, Down Syndrome and Autism. The program will enlist professionals from the music, television and film industry to offer these children voice and instrumental music lessons, as well as theater, movement and dance classes. Each night will be punctuated with campfire jam sessions, open-mike talks and musical entertainment. The program will end with a theater-style talent show presentation. The HeartBeats Music Camp Program will not only give these children an opportunity to practice their talents and discover their distinct voices, it will provide them with an environment to dream, succeed and let their talents shine. |
Williams Syndrome is named after a New Zealand cardiologist who, in 1956, described a
series of patients with very similar distinctive physical and intellectual characteristics. It is a rare congenital disorder caused by the deletion of
elastin and approximately twenty other genes on chromosome #7, and is characterized by a striking mix of physical and developmental characteristics. It
affects males and females equally, and occurs in all ethnic groups. There is no known cure, or standard course of treatment. However, when Williams
Syndrome is correctly diagnosed, it can be treated.
Down syndrome is a genetic condition that causes delays in physical and intellectual
development. It occurs in approximately one in every 800 live births. Individuals with Down syndrome have 47 chromosomes instead of the usual 46. It is the most frequently
occurring chromosomal disorder. Down syndrome is not related to race, nationality, religion or socioeconomic status. The most important fact to know about individuals with Down
syndrome is that they are more like others than they are different. 
What is autism?
The Lili Claire Foundation provides emergency medical services worldwide to children living with neurogenetic
disorders. Since our inception, we have provided emergency medical consultations, diagnoses and treatment to qualifying children living outside the United States, whose parents
cannot afford or access relevant medical information or procedures in their own countries due to lack of availability or financial difficulties.
HeartBeats Music CampThe 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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