The World of Mae

By Paula Green
Ada Mae Grashow, 10, has Phelan McDermid Syndrome (PMS).  This rare genetic condition is caused by the deletion/mutation in the Shank 3 gene.  PMS has only been diagnosed globally in 1,800 people, and it causes life-long severe intellectual and physical disabilities.  It is often misdiagnosed as an autism spectrum disorder (ASD) since it affects language, cognitive and gross motor skills.
At the age of four, Ada’s health and development began to regress.  Medical insurance would not cover all of her therapies, so the Grashow family started a foundation called The World of Mae (WOM).   It was established to help fund Ada’s needs and spread the word about Phelan-McDermid.          According to Ada’s mother Kathryn (Katie), she receives specialized schooling.  “With World of Mae funds, we turned part of our home into a mini early learning center (Sweet Potato Academy).  It is specifically designed to be sensitive to her intellectual disabilities & medical needs, while also being a perfect setting for children between the ages of 2-5. We opened our doors in April 2018 and are grateful for the WOM community to allow us the ability to create this inclusive, respectful environment for Ada and her peers. As an early childhood educator and former kindergarten teacher and Ada’s mom, it is a dream come true to facilitate this discovery and play-based curriculum that fosters such joy in learning!  We really wanted to honor and celebrate the universal uniqueness in us all.” 
         Ada resides in Indiana Township, with her parents Katie & Jon, and two sisters, Wilhelmina, 8 and Oona, 3.   To help with Ada’s cause, the Grashow family is sponsoring a walk.  The World of Mae 5K & 1Mile FunRun will be held on October 5 at the Oregon Pavilion at North Park.  “We don’t call it a race because we truly celebrate people of all abilities and paces. Registration opens at 9:00 a.m., the 5k starts at 10:00 a.m. and the 1Mile FunRun starts at 11:00 a.m.  The courses are on the nature path so participants can enjoy the shade and beauty of the autumn foliage. We also have musicians playing every half-mile along our courses to maintain a strong sense of whimsy throughout the entire experience,” Katie said.

         For more information, on the World of Mae 5K & 1Mile Fun, visit https://runsignup.com/Race/PA/NorthPark/worldofmae.