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Seven Ways in Seven Days: Promoting Williams Syndrome Awareness

April 8, 2013

May is Williams Syndrome Awareness Month!

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. This region includes the elastin gene and affects approximately one 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 a developmental delays ranging from mild to severe. Delays are typically global and most children are quite delayed in meeting milestones such as crawling, walking, 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.

We are excited to have so many awareness events in the month of May to educate the community about Williams syndrome. Please join us in hosting your own event to continue to spread awareness about this rare disorder. If you would like to host an event, you may email [email protected].

Because Williams syndrome is the micro-deletion of chromosome 7, we are launching our 7 Ways in 7 Days Campaign to raise awareness for Williams syndrome! We are asking volunteers to hold a variety of awareness raising activities and events for Williams Syndrome Awareness Month in May. Some of the ways you can get involved:

• Ask 7 people to donate $7
• Tell 7 people about Williams syndrome
• Host an on-line party with a goal of 7 orders

If you would like to join us in raising awareness for individuals with Williams syndrome, visit our website at www.wschanginglives.org to get involved! Proceeds from awareness events will fund our Medical Assistance Programs.

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