Ariz. families raise awareness about rare genetic disorder

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by Stella Inger

azfamily.com

Posted on May 22, 2013 at 3:24 PM

Updated Wednesday, May 22 at 9:57 PM

PHOENIX -- Hundreds of Valley residents packed Steele Indian School Park on Saturday in Phoenix.

Along with 28 other cities across the country, Phoenix took park in a walk to raise awareness for Angelman Syndrome.

Angelman Syndrome is a rare neurogenetic disorder that affects about 1 in 15,000 births. AS is often misdiagnosed as autism and cerebral palsy.

3TV spoke to one family whose 5-year-old daughter, Gracie West, is living with AS. Gracie's parents, Amy and Matt, are committed to raising awareness because they say early diagnosis is key.

"All of the money raised from the walk goes to the Angelman Syndrome Foundation," said Amy.

Doctors say this neurogenetic disorder is caused by a disruption of the 15th chromosome. Symptoms of AS include excessive smiling, jerky movements, seizures and slow development.

The walk in Phoenix on Saturday was a first. In previous years Valley families like the Wests have traveled to San Diego to participate in the annual walk.

"This means a lot to us to have it here" said Matt.

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