Shannon O’Brien reaches out to families affected by SMA
By Gloria Tucker
Shannon O’Brien ’09 ahs was diagnosed with spinal muscular atrophy when she was 2 years old. More than two decades later, she’s using her experience to make a difference.
As a support administrator for Families of SMA, O’Brien is there for those who’ve recently been diagnosed with the disease, which affects muscles used for crawling, walking, head and neck control and swallowing. It is the No. 1 genetic cause of death in infants. As well as counseling and sending out care and information packages, she helps manage the organization’s annual conference.
Based in Elk Grove Village, Families of SMA has funded and directed more than $50 million for research to combat the affliction, which tends to manifest in small children. The conference – the largest annual gathering of its kind in the world – brings researchers together with parents and children affected by SMA, and features networking, workshops, a kids’ program and a family fun fest and carnival.
“Families of SMA is an amazing organization that offers so much support,” O’Brien says. “I am very fortunate to be part of a caring organization that keeps us connected and current both on the research front as well as the day-to-day living issues we face.”
O’Brien says the majority of children diagnosed with SMA need respiratory support and a feeding tube to survive. “Families also have trouble getting insurance to cover the cost of all the equipment, therapies and supplies their children need to get around,” she explains.
O’Brien was first introduced to Families of SMA when her parents were given a pamphlet by a nurse at the hospital when she was diagnosed. Her family decided to attend a SMA conference, and she has been involved ever since.
She says growing up with SMA wasn’t too difficult because she has a relatively mild form of the disease – which means she only has trouble walking as opposed to eating and breathing.
O’Brien still lives in Grayslake, a town near the Wisconsin border where she grew up. While attending high school, she began volunteering for Families of SMA. “I helped out with a lot of office work,” she says, “and data entry as well.”
She kept working part-time work for the organization when she entered the University of Illinois.
“I kind of came in undecided to the College of Liberal Arts and Sciences,” O’Brien explains, “but then I took a few speech and hearing science classes and decided I would like to pursue that for my major.”
She says her speech-language pathology major in the College of Applied Health Sciences helps in her work because some people who have SMA have swallowing and speech difficulties.
While at Illinois, O’Brien, who uses a wheelchair, lived in Beckwith Hall, a residence hall designed for students with physical disabilities who require assistance with the activities of daily living. (Beckwith has since been replaced by Nugent Hall, a state-of-the art facility which opened in 2010.)
“I learned a lot of good skills at U of I,” she says. “I think it kind of helped me get to know about people with a lot of different disabilities.”
O’Brien says she believes having SMA helps in her work. “I know what the families are going through,” she observes. “I can reach them a lot easier.”
Ken Emerson ’69 ahs agrees. “She’s one of the most inspiring people I’ve met,” says Emerson, whose 5-year-old grandson is affected by SMA. “She’s a sweet girl with a happy smile.”
Tucker is a junior in news-editorial journalism in the College of Media at Illinois and a spring semester intern at the UI Alumni Association.
Editor’s note: Ken Emerson, who is profiled on p.46 of the Spring 2012 issue of Illinois Alumni, is organizing a golf tournament to benefit Families of SMA. For details on the tournament, to be held in Lemont on Saturday, May 19, email him at firstname.lastname@example.org. To learn more about Families of SMA, visit www.fsma.org. The organization’s conference is set for June 21-24 this year.