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Williams Syndrome & The Williams Syndrome Changing Lives Foundation

Williams Syndrome & The Williams Syndrome Changing Lives Foundation. Penny Perez - CEO and Founder February 2013. What is Williams syndrome?. Williams syndrome is a rare genetic disorder caused by the deletion of the long arm of chromosome 7

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Williams Syndrome & The Williams Syndrome Changing Lives Foundation

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  1. Williams Syndrome &The Williams Syndrome Changing Lives Foundation Penny Perez - CEO and Founder February 2013

  2. What is Williams syndrome? Williams syndrome is a rare genetic disorder caused by the deletion of the long arm of chromosome 7 • Random genetic mutation rather than inheritance, most often causes the disorder • Is present at birth • Affects approximately 1 in 10,000 births • It affects males and females equally • Is characterized by a wide range of medical problems with the most significant being cardiovascular disease

  3. Medical problems 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 • urinary tract issues

  4. Who are we? The Williams Syndrome Changing Lives Foundation • is a non-profit foundation centered on increasing Williams syndrome awareness, increasing education for families, the public, physicians, educators and therapists • was formed to enhance the lives of children and adults living with a diagnosis of Williams syndrome by providing needed financial assistance with medical, therapeutic, recreational needs and other developmental resources • provides support for individuals, parents and families through support, outreach and sponsored functions

  5. Our Inspiration “Inspired by my youngest son, Keith, who was diagnosed with Williams syndrome and Autism, I formed Williams Syndrome Changing Lives Foundation with Heather Lawrenz, who was inspired by her daughter, Kaitlyn, also diagnosed with Williams syndrome, with the vision of providing financial assistance and support to individuals and families affected by Williams syndrome.” Keith & Kaitlyn

  6. Our Mission Our mission is strictly focused on the medical, therapeutic and developmental needs of children and adults with Williams syndrome. We are a wholly volunteer organization with a goal of 90 cents of every dollar going directly to families in need.

  7. How can we help? Financial assistance for medical needs, including: • costs associated with travel to Williams syndrome specialty clinics throughout the US • specialized medical equipment • therapy sessions • specialized educational needs • specialized camps (including music and summer camps) • assistance for specialized in-home care • ABA (Applied Behavior Analysis) services • costs associated with service and/or companion animals • nursing services • assistive technology devices • prescribed medications • specialized car seats • specialized formula • therapeutic feeling tools

  8. How can we help? Medical and developmental resources, such as costs associated with treatment from a Developmental Pediatrician and/or behavioral therapy. Provide support resources for families and/or individuals such as current medical and developmental information. Provide community, educational and physician awareness efforts regarding the medical care and needs of individuals affected by Williams syndrome through outreach efforts to communicate current issues, documented medical, developmental and educational guidelines regarding Williams syndrome.

  9. How you can get involved Here are some ways you can help: • Holding Awareness Events • Host a Walk or Run for Williams syndrome • Participate in Dining to Donate Program • Involve your office through Workplace Giving • Host In-Home Sales (Scentsy, Tupperware, Tastefully Simple, Avon, 31 Gifts) • Hold Garage Sales/Bake Sales • Letter Campaign to generate donations • Raise money thru your use of GoodSearch.com, GoodShop.com or GoodDining.com • Purchase items from our online store at www.wschanginglives.org/Store.html • Volunteer with us

  10. More Information Williams Syndrome Changing Lives Foundation PO Box 76021 Saint Petersburg, FL 33734 Telephone: 727-557-7177 Website: www.wschanginglives.org Email: info@wschanginglives.org /WilliamsSyndromeChangingLivesFoundation

  11. Thank You!For Helping Us Change Lives

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