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 been given the 2012 top-rated list on GreatNonProfits.org by families helped by the foundation. Families with members who battle Williams syndrome are saying;
The Williams Syndrome Changing Lives Foundation is a dedicated organization that has gone above and beyond in helping them with resources and information about Williams syndrome.
This is an extraordinary high honor for a non-profit that only came into being in September of this year.
I am humbled and appreciative of the great reviews of the WS Changing Lives Foundation. We are 100 % committed to helping those who are diagnosed with Williams syndrome and spreading awareness about this rare genetic disorder. – Penny Perez, President of WS Changing lives Foundation
The Williams Syndrome Changing Lives Foundation organization was incorporated as a non-profit in the state of Florida and is awaiting approval for its 501(c) (3) status that is expected within 60 days. The Williams Syndrome Changing Lives Foundation was founded by parents, Penny Perez, whose son, Keith, has Williams syndrome and Heather and Ron Lawrenz whose daughter, Kaitlyn, also has Williams syndrome. These parents with their firsthand experience of Williams syndrome decided to create the organization to help other parents who have to grapple with the effects the disorder has on their children as well as bring a greater public awareness to Williams syndrome. The Williams Syndrome Changing Lives Foundation seeks to enhance the lives of children and adults who live with Williams syndrome. It will provide needed financial assistance with medical, therapeutic, recreational needs and other developmental resources. It is headquartered in St. Petersburg, Florida.
Among the assistance provided by the Williams Syndrome Changing Lives Foundation are 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.
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