Senator Moody honors Phelan-McDermid Support Group
5/13/2008

In an effort to raise public awareness, state Sen. Dan Moody has honored members of an international support group for the rare genetic disorder Phelan-McDermid Syndrome with a proclamation recognizing the group’s efforts. The proclamation also designates July 21-27, 2008, as Phelan-McDermid Syndrome Awareness Week.

“The first step in finding a cure for any disease or developmental disorder is to raise awareness,” said Sen. Moody. “It is important for the state to continue to inform parents about this genetic disorder, because experts are now linking it to autism in children. This is why the work of Dr. Katy Phelan and other medical professionals is so monumental.”

In May 1988, Dr. Katy Phelan identified a unique chromosomal anomaly while analyzing a newborn baby, whose only symptom was poor muscle tone. At the time, Dr. Phelan was a lab director at the Greenwood Genetic Center in South Carolina. There is a wide range of symptoms associated with Phelan-McDermid Syndrome, including moderate to severe developmental delays, absent or severely delayed speech, normal to accelerated growth, and unusual physical features.

“We’re hoping that the medical community will begin to recognize this condition through continued efforts to raise awareness,” said Priscilla Hackstadt, whose three-year-old son Christopher has been diagnosed with Phelan-McDermid Syndrome. “The characteristics displayed by someone with Phelan-McDermid Syndrome are similar to patients who are being diagnosed with autism, so I think it’s very important to raise awareness with parents as well. I especially want to thank Doctor Phelan and Senator Moody for their determined efforts to educate the public, so that diagnosis and treatment for affected individuals can begin much sooner.”

The Hackstadt family attended today’s presentation along with the Nolan family of Cumming, GA, whose son Matthew has been diagnosed with Phelan-McDermid Syndrome.

“Families across the country and the world have children affected by Phelan-McDermid Syndrome,” added Dr. Phelan. “It is our hope to raise awareness of the disorder and its symptoms so that appropriate treatment and care can be provided. State recognition certainly helps our efforts to spread the word about this genetic disorder, and we are grateful to Senator Moody for his efforts.”

Follow this link for more about this Proclamation.

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