on May 19th, from 3pm to 6pm, Pleasantville residents, Stacey and Barry Follman, along with their daughters, Cecelia and Miryam Follman, will host “Aces for Aaron,” at Chestnut Ridge Racquet Club, 30 Snyders Hill Road, Mount Kisco, New York – 914.666.2898.
This event will commemorate the life of Aaron Ross Follman on what would have been his 10th birthday. “We want to celebrate Aaron’s life. And we want the day to reflect our family,” states Barry Follman. “Supporting Kennedy Krieger is an important part of our lives. Playing tennis is a huge part of our lifestyle. We combined these things to create a day that celebrates our son.”
The day will include tennis for players at all levels, face painting, food, music and dancing, giveaways, raffles and a silent auction through the website www.biddingforgood.com. A suggested donation of $50 (single) to $75 (family) will go directly to the Kennedy Krieger Institute in Baltimore, Maryland, as will all proceeds from the event, and will be used for research dedicated to newborn screenings and ensuring that parents have knowledgeable health care professionals to discuss and assist with their child’s treatment.
Aaron Ross Folman died at eight months of age from Zellweger Syndrome (ZS), a genetic disorder that is typically diagnosed at birth. Signs and symptoms can include poor muscle tone, poor feeding, seizures, hearing loss, vision loss, distinctive facial features, and skeletal abnormalities. Infants with ZS also develop life-threatening problems in other organs including the liver, heart, and kidneys. ZS is caused by mutations in any one of at least 12 genes. Infants with ZS rarely survive more than one year of life. “When our son was born on May 21, 2002, he was immediately diagnosed with Zellweger’s Syndrome. We were blessed to have Aaron in our lives for eight months, and he taught us what it meant to be parents,” states Stacey Follman. “With the support and advice of Drs. Gerald Raymond and Steven Steinberg of the Kennedy Krieger Institute, we gave Aaron the best life possible. Since that time, Kennedy Krieger has been our dedicated charity. We are hoping that our community will come together to honor Aaron’s life and support the Kennedy Krieger Institute.” The Kennedy Krieger Institute has earned international recognition as a premier treatment center for children with disabilities— from the rarest of genetic disorders to the most common learning problems. In one year, Kennedy Krieger Institute treats more than 16,000 patients and provides over 100,000 visits. The institute is affiliated with Johns Hopkins and supports research dedicated to many projects associated with the complex terminal genetic disorder ZS.
There is no cure for ZS, nor is there a standard course of treatment. At this time, most treatments are symptomatic and supportive. To register for the event, visit www.kennedykrieger.org/acesforaaron To bid on the silent auction, goto acesforaaron10.com. For more information about Zellweger Syndrome or the Kennedy Krieger Institute, visit www.kennedykrieger.org
