ROANOKE TIMES
Copyright (c) 1996, Roanoke Times
DATE: Monday, December 30, 1996 TAG: 9612300012
SECTION: VIRGINIA PAGE: C-1 EDITION: METRO
DATELINE: RICHMOND
SOURCE: EDWIN SLIPEK JR. SPECIAL TO THE ROANOKE TIMES
They slosh through a muddy tree lot with their brood of three, looking for the tree that will make the grade in their comfortably rambling, white frame home. Patrick, 7, trudges along. Two-year-old Megan's stroller gets stuck in the mud. And 10-year-old Andrew's motorized wheelchair sinks deep into the gook, spinning mud in all directions.
Mission accomplished, the wheelchair is hosed down. Later, a 12-foot tree squashes the metal stand.
Still, it was a successful family outing at the end of a year that has proved gratifying for the Slays - and potentially gratifying for Andrew and the other 20,000 American children afflicted with spinal muscular atrophy, or SMA.
The inherited neurodegenerative disease is little understood. The main feature of SMA is weakness, with loss of muscle tone. The muscles atrophy when the disease kills the motor neuron cells, preventing the nerves from getting messages to the muscles. Through lack of stimulation, the muscles don't get the command to move, and leaving the child in a state of progressive weakness.
Although SMA has not made it into the vocabularies of Americans conversant about cancer, heart disease, AIDS and Alzheimer's, it is, in its most severe form, the most common genetic cause of death in infants.
The Slays are out to change that.
|n n| Nine years ago, when 13-month-old Andrew wasn't walking and one ankle felt soft, the pediatrician sent him to a specialist. Members of the family of neuromuscular disorders were eliminated. Muscular Dystrophy. Lou Gehrig's Disease. Polio.
The diagnosis: SMA.
"We were reeling," recalled Joe Slay. There were tears. Lots of tears. Since little was known about SMA, the Slays felt helpless at the prospect that Andrew would weaken, never walk or worse.
Doctors offered no hope. Joe and Martha Slay turned inward, but found solace in their church congregation.
``The church was instrumental in keeping our lives together,'' Joe Slay said. ``People would pick us up and throw us in the back of a station wagon and take us places. Those people don't give up when you have a problem - none of this `tough luck' or `it's God's will' stuff. They have never given up that one day Andrew will be walking. You need to be around people like that.''
The Slays, buffered by faith, and determined, sought people in the medical and scientific communities who had experience with the disease. They heard about the work of a Columbia University geneticist, Conrad Gilliam. He started intensive research into SMA in 1987, about the time of Andrew's diagnosis. By 1990, Gilliam had narrowed his gene search from 3 billion to 2 million possible locations.
In the race to help Andrew, the Slays finally found a way to get on the track: A $100,000 DNA sequencer would let Gilliam's DNA sorting proceed 20 times faster.
By fall 1991, the Slays had organized Andrew's Buddies, a nonprofit foundation with the goal of raising $100,000 in 30 days. Where they had once kept a low profile, they catapulted their son into the role of poster child. By March 1992, Gilliam had his sequencer.
The ball kept rolling.
nThe following spring, Andrew's Buddies made the single largest contribution to an international conference in Boston to establish protocols for clinical trials of new drugs to treat neuromuscular disease.
nA year later, $50,000 was given to Gilliam for continued research.
nBy 1994, word was spreading and corporations were helping. The Associated Press and USA Today ran stories about SMA. Richmond-based Ethyl Corp. made a $30,000 grant to establish SMA/See My Art, a fund-raising program that sells products featuring art by SMA patients. Christmas cards designed by 10-year-old SMA patient Casey Tridico were sold nationwide. She died in July 1995.
nAlso in 1994, researchers closed in on the mystery of SMA. Building on the work of Gilliam at Columbia, two teams - one Canadian and one French - reported discovering separate genes thought to cause SMA. The two genes are adjacent in the same chromosome. Much more work lies ahead.
nLast year, Andrew's Buddies gave $100,000 to Dr. Alex MacKenzie's Ottawa team and an additional $25,000 to another physician - Dr. Lucien Houenou of Wake Forest University - for testing promising new drugs.
With no paid staff, the visibility and fund-raising efforts have been bolstered by a cadre of volunteers and the considerable energies and talents of Richmond-based Martin Public Relations. Joe Slay is president of the firm. Martha Slay, a professional opera singer who has performed widely, has found new uses for her talents.
``She always talks about how a performer has to `sell' a song when singing,'' Joe Slay said. ``She can go into a major corporation and beat them down until they give money.''
In February, Dan River Mills announced production of a line of bedding products using the design of 12-year-old Delphine Andrews, who was diagnosed with SMA 10 years ago.
And in May, $120,000 was raised in Richmond at an auction attended by about 500 people.
|n n| These days, at their Northside Richmond home, communications central for SMA research, the phone seldom stops ringing. "We get phone calls from people who say that their baby is dying. They need more information," Joe Slay said. "We're beginning to be successful. People trust us."
"It's not going to slow down," said Joe Slay, a faraway look in his eye.
To decompress, the Slays escape on a weekly date. They dine out together, but they always take their planning calendars with them.
And amid the flurry, yes, Martha Slay is a soccer mom. Son Patrick plays at The Collegiate School, where both he and Andrew are enrolled. ``Andrew feels any hit his little brother takes,'' Joe said, ``and he gives him coaching advice.''
At least three days weekly, Andrew swims at a pool near their home. Patrick often accompanies him.
"They have arguments, but they are tight, tight, tight," their father said. "They have heated discussions about football. I've got two jock nuts on my hands."
Andrew is a Webelo Scout (between a Cub and a Boy Scout). He is a good student with a particular interest in geography. "When he gets home, he buzzes upstairs and gets his homework done," his father said.
|n n| The new year looks promising on the research front. Early in 1997, the first-ever clinical trials of a drug with the potential to treat SMA start in nine cities in the United States and Canada.
Closer to home, Martha Slay will spearhead SMA - Supporting Mothers' Advocacy - which will help women cope with the emotional, physical and medical stresses of caring for a child with spinal muscular atrophy. Andrew's Buddies plans an April conference in Richmond.
"In many cases the best advocate for supporting research that could eventually lead to a cure is the mother herself," Martha Slay said. "We want to empower the mother not just to survive on a day-to-day level, but to work effectively to defeat the disease itself."
This month, many of the doctors who will be leading the clinical trials of the drug, Gabapentin, met in Richmond to complete plans.
At one point, Joe Slay recalled, the physicians turned to him and asked, "Have you ever considered a national research conference?" Slay made a wide-eyed grimace. Say what?
"I think we can do that," Joe responded, apparently undaunted.
``I'm not big on magic,'' he said. ``But I'm big on miracles. ... I think you have to be busy about creating a place for miracles to occur.''
For more information on Andrew's Buddies, call (804) 344-3864 or write P.O. Box 5443, Richmond 23220.
LENGTH: Long : 140 lines ILLUSTRATION: PHOTO: TAMARA VONINSKI/Landmark News Service. Martha and Joeby CNBSlay with their children, (from left) Andrew, 10, Patrick, 7, and
Megan, 2. color.