Ryan Manfre is a typical 5-year-old in many ways. He attends preschool five days a week, likes animals and going to the zoo, reading books and coloring. He loves watching sports, playing T-ball and taking swim lessons.
But Ryan also goes to physical therapy every other week in an effort to help alleviate the effects of Spinal Muscular Atrophy (SMA), a genetic neuromuscular disease currently with no known treatment or cure.
“SMA affects Ryan's balance, core strength, and gross motor skills, (such as) running and jumping, explained Ryan’s mom, Becky Manfre. “He also fatigues easier than typically developing children his age.”
Ryan’s parents, Becky and Brian of Chicago, and grandparents Ken and Jeanne Emerson of Lemont, had never heard of the disease before Ryan was diagnosed with SMA Type III at the age of 18 months. But as their knowledge about SMA grew, so did the family’s commitment to finding a cure.
Last year, Ken Emerson organized a charity golf outing to benefit Families of SMA, a non-profit organization dedicated to funding research to fight the disease. And now, as Ryan’s grandpa says, “It’s time for round two.”
The second Tee Off with the Drive to Cure SMA in Honor of Ryan is scheduled for 11:30 a.m. to 7 p.m. on Saturday, May 19, at Gleneagles Country Club,13070 McCarthy Road, Lemont.
The event will include 18 holes of golf, cart, “dawg” at the turn, dinner ticket, hole events, a silent auction, raffle, 50/50 prize and more. The format is a four-person scramble with a shotgun start.
Registration, which costs $125 for individual golfers and $500 per team, will close May 10. Dinner-only tickets may be purchased in advance or on the day of the event for $50.
Sponsorship opportunities, ranging from $100 to $5,000, are also available until May 5.
Mom Becky said Ryan received his first set of golf clubs last summer and likes practicing in the yard with his dad and grandpa.
And now, community members can polish up their clubs and lend their support to a good cause while enjoying a day of golf May 19.
Ryan's family is hoping for another successful fundraiser to benefit Families of SMA.
“Last year's event, thanks to the generosity and support of our family and friends, was a huge success,” Becky said. “We hope this year brings the same results. Together we will help to find a cure.”
For more information or to register for the event, click on www.fsma.org/GolfForRyan2012.