BENEFITING: WILLIAMS SYNDROME ASSOCIATION INC
EVENT DATE: Oct 16, 2011
For the second year, Team Michaela WSA --now 20+ strong, will be running the Newport Half Marathon on Sunday October 16 in honor of our daughter Michaela Rose.
We have teamed up with the Williams Syndrome Association to help increase awareness of WS and support critical programs for individuals with WS and their families. The WSA is the most comprehensive resource for Williams Syndrome in the country. They provide support for my family with eduational materials and conferences, connections to medical professionals who are experts on WS, and many enrichment programs.
From Michaela Rose:
As many know, I was born with Williams Syndrome. I was diagnosed when I was 2 1/2 years old. Williams Syndrome is a genetic disorder that effects me and more than 25,000 other children and adults in the United States for a lifetime. That's because we are all missing 26 genes on one copy of chromosome #7 - just one tenth of one percent of our gene make-up. This tiny deletion results in cardiovascular problems, kidney issues, developmetal delays, learning disabilities and other issues - in adition to all that, for me, it also means a seizure disorder (Epilespy) and Juvenile Rheumatiod Arthritis - that will require special treatments throughout my life to help me reach my full potential. Of course, the good news is that most people with WS also have excellent verbal abilities, friendly personalities and a love of music -strengths that help us everyday! I love life and you can tell that by the way I am smiling most of the time! I enjoy being with my friends and family. I look forward to going to school everyday because I love to learn new things. Please join me and my family to help the WSA provide valuable programs for kids like me!!