Grandson's Fight Against Spinal Muscular Atrophy Inspires Lemont Resident to Organize Golf Fundraiser

Ask Ken Emerson about spinal muscular atrophy, and the Lemont resident can rattle off a number of facts about the disease.

He can tell you that one in 40 people carry the gene that causes SMA, and that nearly 500 children die from Type 1 SMA each year. He can also tell you that worldwide that number is nearly 10,000.

“Those are some scary numbers,” he said.

Emerson has become somewhat of an expert since his 4-year-old grandson, Ryan Manfre, was diagnosed with Type 3 spinal muscular atrophy about three years ago.

The most alarming statistic to Emerson about the disease is that it is the No. 1 genetic killer in children under age 2.

“Before Ryan we had no idea such a thing existed,” he said. “It’s devastating.”

SMA is a disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.

While Emerson is grateful that Ryan’s diagnosis is less severe, he is concerned about the number of children being diagnosed with the disease, for which there is no cure.

This month Emerson and his wife, Jeanne, are organizing a golf outing in Lemont to benefit research for spinal muscular atrophy. The Tee Off with the Drive to Cure SMA in Honor of Ryan will be held 11:30 a.m. to 7 p.m. on May 21 at , 13070 McCarthy Road.

Individual registration for the 18-hole, four-person scramble is $125. The day will also include a silent auction, raffle, 50/50 prize and a banquet.

Emerson decided to make it a golf fundraiser because he enjoys the sport.

“I tell people I don’t play golf, I play 'at' golf,” he said. “I’m not very good but I enjoy it.”

Besides a fun day on the links, Emerson hopes to shed some light on the plight of spinal muscular atrophy.

“We’re not only raising funds,” he said. “We want to raise awareness.”

Emerson’s grandson receives occupational therapy and swims in order to strengthen his legs and combat the disease.

“They really have no medical treatment,” Emerson said.

Proceeds from the golf outing will benefit Families of SMA, a non-profit organization dedicated to research toward a cure for SMA, and support programs for all families affected by SMA.

The Emersons are humbled by the number of Lemont businesses and restaurants that are helping to sponsor the event.

“They’ve been exceedingly generous,” Emerson said. “It’s overwhelming how good they’ve been.”

For more information about the event, visit www.fsma.org/golfforSMAandRyan.