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Local Fun Run to Raise Money and Awareness for Child with Rare Genetic Disorder

Oct 01, 2017 11:10AM ● Published by North Hills Monthly magazine

The fourth annual World of Mae 5K and one-mile family fun run festival returns this year with a new location at North Park. World of Mae is a labor of love founded in 2013 by parents Jon and Katie Grashow, when their then 5-1/2-year-old, Ada Mae, was diagnosed with Phelan-McDermid Syndrome after years of being misdiagnosed.

Phelan-McDermid Syndrome is caused by a mutation in the Shank3 gene and lifelong symptoms include hypotonia (weak muscles), intellectual disabilities, autism symptoms, seizures, inability to sweat, sleep issues, weak immune systems and gastrointestinal sensitivities. It has only been diagnosed in 1,300 people worldwide, and therapeutic treatments for the disease are not covered by typical insurance providers.

Now 9, Ada Mae requires daily therapy and caretaking. Her partners want the event to not only help mitigate the underdiagnosis of Phelan-McDermid Syndrome in other children, but also create a space of inclusivity and fun for individuals and families.

“World of Mae aims to foster a culture of dignity and respect for the uniqueness within us all. Ada has Phelan-McDermid, but she is not defined by this syndrome,” said Kathryn Grashow, Ada Mae’s mother and event organizer. “Every detail is designed to be user-friendly for people of all abilities; for example, the hula hoopers create visual stimulation for people who cognitively do not understand the concept of waiting in a line.”

In addition to the 5k and one-mile run, the event includes a basket raffle, face painting, hula hoop troop entertainment, great food, music from DJ Greg McAtee, as well as two dinosaur shows presented by Tony Palermo. 

In-person registration and check-in for the Oct. 7 event opens at 9 a.m.; you can also pre-register at www.RunSignUp.com. The race and other activities begin at 10 a.m. at the Idaho and Oregon pavilions off of North Ridge Drive in North Park. All proceeds raised will go toward Ada Mae’s ongoing therapeutic, educational, adaptive and medical expenses.

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