The Williams Syndrome Changing Lives Foundation Launches ‘Giving Back Program’

October 5, 2012

Organization: Williams Syndrome Changing Lives Foundation

The Williams Syndrome Changing Lives Foundation, an organization centered on increasing Williams syndrome awareness, increasing education for families, the public, physicians and therapists has launched its Giving Back Program.

Through the Giving Back Program, the Williams Syndrome Changing Lives Foundation connects individuals with various items to make their lives easier. The first recipient of the program was Davion Robinson, an eight year old boy from Los Angeles boy who has Williams syndrome and autism. With a generous donation from Fun & Function, LLC, Davion will be receiving a mobile ball chair. Recommended by his doctor and therapist, this sensory chair will assist him with behavioral issues at school.

The Williams Syndrome Changing Lives Foundation was founded by parents, Penny Perez, whose son, Keith, has Williams syndrome (WS) and Heather and Ron Lawrenz whose daughter, Kaitlyn, also has Williams syndrome. These parents, with their firsthand experience of WS, decided to create the organization to help other parents who have to grapple with the affects the disorder has on their children as well as bring a greater public awareness to Williams syndrome. Headquartered in St. Petersburg, Florida, the foundation seeks to enhance the lives of children and adults who live with Williams syndrome, also providing needed financial assistance for medical, therapeutic, recreational needs and other developmental resources.

Assistance provided by the Williams Syndrome Changing Lives Foundation requires a complete application and includes: financial assistance for medical needs, including costs associated with travel to Williams syndrome specialty clinics throughout the United States, specialized medical equipment, therapy sessions, specialized educational needs, specialized camps (including music and summer camps), assistance for specialized in-home care and ABA (Applied Behavior Analysis) services; financial assistance for medical needs including costs associated with service and/or companion animals, nursing services, assistive technology devices, prescribed medications, specialized car seats, specialized formula and therapeutic feeling tools; medical and developmental resources, such as costs associated with treatment from a developmental pediatrician and/or behavioral therapy; support resources for families and/or individuals such as current medical and developmental information; community/educational and physician awareness efforts. No funds will be provided directly to the applicant. After application approval, funds will be disbursed to the physician, clinic, or individual or company providing the approved services or goods.

Williams syndrome (WS) is a rare genetic disorder caused by the deletion of the long arm of chromosome 7. A random genetic mutation (deletion of a small piece of chromosome 7), rather than inheritance, most often causes the disorder and is present at birth. It affects approximately 1 in 10,000 births and affects males and females equally. Williams syndrome is characterized by a wide range of medical problems with the most significant being cardiovascular disease. Medical problems can include hypercalcemia, which is many times present at birth, narrowed arteries causing high blood pressure, kidney problems, chronic ear infections, gastrointestinal issues, thickened organs, optical issues, hernias, rectal prolapse, and urinary tract issues. Only a very small percentage of individuals are diagnosed with both Williams syndrome and autism.

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