The Williams Syndrome Changing Lives Foundation Launches With Aim of Increasing Williams Syndrome Awareness, Increasing Education for Families, and the Public
The Williams Syndrome Changing Lives Foundation Enhances the Lives of Children and Adults Living With Williams Syndrome.
- (1888PressRelease) September 19, 2012 - 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 officially launched. The 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 90 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, 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 affects 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.
"When researching medical and developmental options and services for my son, Keith, I was shocked to find that many developmental services (developmental pediatricians, physical, speech and occupational therapy and ABA services) are either not covered under a typical insurance plan or the coverage is very limited, said Penny Perez, one of the Williams Syndrome Changing Lives Foundation's founders who serves as President and Treasurer. "I wanted to start a foundation that assists families with these costs."
"I was told that Keith would probably not live past the age of 13 due to his vascular issues. When researching surgical options for Keith, I had to travel to a Williams Syndrome Clinic at Children's Hospital of Philadelphia for answers", continued Perez. "The cost of the medical services and travel from Florida were not a covered expense under Keith's insurance plan. My goal was to create a foundation that assists families with these exorbitant costs. Williams syndrome is rare, and many physicians are not familiar with the diagnosis and all of the issues and medical complications surrounding Williams syndrome. We started the Williams Syndrome Changing Lives Foundation to work to change that and make a difference."
Williams syndrome 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. It 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.
Individuals with Williams syndrome also have developmental delays ranging from mild to severe. Delays are typically global and most children are quite delayed in meeting milestones such as crawling, walking and talking and many children have significant feeding difficulties. Williams syndrome is also associated with a characteristic cognitive profile of mental strengths and weaknesses composed of strengths in verbal short-term memory and language, combined with severe weakness in visuospatial construction. Mild to severe anxiety and Attention Deficit Disorder are also common features of Williams syndrome. No two individuals with Williams syndrome are alike and the degree of severity in characteristics are variable from person to person. It is important to also remember that not all medical problems are present at birth and many occur over time and some may not be realized until adulthood.
Williams syndrome can be confirmed by a blood test, fluorescent in situ hybridization (FISH) or targeted mutation analysis. Common characteristics of Williams syndrome are cardiac issues, hypertension, gastric reflux, gastroparesis, hypercalcemia, chronic ear infections, hernias, low muscle tone, hyperacusis (sensitive hearing), strabismus, poor growth, hoarse voice, early puberty, delay in meeting developmental milestones, delays in speech, language and communication, delays in fine and gross motor skills, phobias, excessive worrying, and mild to severe anxiety. Williams syndrome cannot be cured and there is no standard course of treatment. Each medical and developmental issue should be addressed by a specialist.
Serving as the Board of Directors for The Williams Syndrome Changing Lives Foundation are:
Penny Perez - President/Treasurer
Heather Lawrenz - Vice President/Secretary
Bert French - Advisory Board Member and Director of Public Relations
Ron Lawrenz - Advisory Board Member
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. 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.
Additional information on The Williams Syndrome Changing Lives Foundation may be obtained at http://www.wschanginglives.org or on their Facebook page.
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