
DATE: Tuesday, June 24, 1997                TAG: 9706240273

SECTION: FRONT                   PAGE: A1   EDITION: FINAL 

SOURCE: BY LIZ SZABO, STAFF WRITER 

DATELINE: CHESAPEAKE                        LENGTH:  139 lines

IN SEARCH OF A CURE AN "ORPHAN DISEASE." A DETERMINED MOTHER. SHANNON WARD'S GOAL IS SIMPLE, IF DAUNTING: TO RAISE $50,000 IN HOPES OF HELPING HER DAUGHTER FIGHT FOR HER LIFE.

Few people have ever heard of spinal muscular atrophy, the crippling, degenerative disease that is killing 8-year-old Kindal Evers.

The disease has so weakened Kindal's leg muscles that she has never been able to walk. It so tires her biceps that she can no longer raise her arm in class. And eventually it will wear down her lungs so that she will not be able to breathe.

Doctors call SMA ``an orphan disease.'' There are no pledge drives. No telethons. No colored ribbons commemorating its victims.

And there are no big organizations to raise money for research.

But Kindal does have one tireless advocate in her battle to live - her mother, Shannon Ward.

Ward has decided to do what the federal government will not - fund research toward a cure.

She has founded ``Kindal's Crusaders,'' a nonprofit organization. Its goal is simple, if titanic - to raise $50,000 in six months to support a privately financed drug trial of a medicine called Gabapentin.

It is the first national drug trial for SMA. And it is being funded wholly by parents like Ward.

``If this is all it takes, if it's just money, then it's not too much work,'' Ward said. ``There's no such thing as too much work when you talk about your child not being around.''

Ward is modeling Kindal's Crusaders after the first SMA parents advocacy group, Richmond-based ``Andrew's Buddies,'' run by Joe and Martha Slay, the parents of an 11-year-old boy.

Andrew's Buddies has funded nearly all the pivotal research on SMA, said Dr. Robert Leshner, a neurologist at the Medical College of Virginia who is conducting part of the Gabapentin trial. When the group was formed in 1991, scientists did not even know what caused the disease. Since then, geneticists have isolated the two genes that contribute to SMA.

``Before we found out about this drug trial, we had no hope,'' said Ward, 27. ``When Kindal was diagnosed, the doctors told us to take her home and enjoy the time we had with her.

``That was unacceptable to me.''

Thanks to Andrew's Buddies - which has not only raised and spent $500,000 for research but also has organized scientific symposiums to bring the best and brightest scientists together - researchers will begin testing Gabapentin on 200 adults at eight test sites throughout North America. If all goes well, they will test the drug on children next.

Ward tries to be honest with her daughter.

She knows Gabapentin isn't a cure. It probably won't save Kindal's life. It won't get her out of her wheelchair.

But it might allow Kindal to brush her teeth and comb her hair. And to breathe freely - even when she has the sniffles.

``It has been so terrifying to live with the fact that my child could die from something as simple as the common cold,'' Ward said.

Kindal has more immediate goals.

``It would make me stronger,'' she said, lisping slightly - not from her disease, but from her missing teeth. ``If a balloon were up above my head, like this, I could reach it and pull it down.''

Last week, Kindal attended a Muscular Dystrophy Association camp in Wakefield. A week spent in the sun has flecked her walnut-brown hair with gold and dappled her nose with faint freckles. Representatives from Mary Kay showed the kids how to paint their nails. Kindal's nails are painted bright red, a brilliant contrast from her white, dimpled hands.

The disease has weakened her limbs, but not paralyzed them.

Kindal nearly won the kids' informal wheelchair races. And it was her six goals that led her soccer team to victory. She can't kick very hard, but with her wheelchair foot rests turned out of the way, she gives it her best effort.

Kindal's passion, however, is stock car racing.

Her wide blue eyes light up when describing ``her'' racing car. Mike New, a driver at the Langley Speedway in Hampton, emblazoned his car with ``Kindal's Crusaders - Fighting to Defeat Spinal Muscular Atrophy.'' Kindal visits the raceway at least twice a month.

``She's getting to be regular,'' Ward said.

Kindal isn't worried about her upcoming surgery. She considers Leshner one of her pals. She calls him ``Doc.'' He calls her ``Rabbit,'' Kindal boasted, ``because I'm so fast in my wheelchair.''

This is her second surgery. Last year, doctors straightened her spine, which had already compressed her heart and lungs. This summer, they'll reconstruct her hip and the tendons in her legs.

There is a 30 percent chance Kindal won't survive the surgery, Ward said. And there are limits to what surgery can do. That's why Ward is pressing so hard for a cure.

None of the money for the Gabapentin trial will come from the government, said Joe Slay. Andrew's Buddies has already raised $100,000. And pharmaceutical company Parke Davis will donate drugs and placebo pills worth nearly $40,000.

That's enough to get the trial started.

But researchers need $85,000 more to complete the two-year trial, Slay said.

Ward has assigned herself the task of raising $50,000 of the $85,000.

That may seem like a lofty goal.

But she has already raised $3,000 from a children's ``read-a-thon'' at Kindal's school, Western Branch Primary, and Western Branch Intermediate School, where Kindal will go next year.

And Cummins Atlantic diesel fuel company, where Ward's husband works, has donated an office computer. Ward can use it. Her mailing list already includes 500 names.

Parents like Ward have been crucial in fighting SMA, Leshner said. Private funding is vital for this kind of research.

Government agencies such as the National Institutes of Health often require that drugs show promise in preliminary studies - such as this Gabapentin trial - before they award larger research grants, he said.

Kindal's artwork will appear this winter on Christmas cards and a calendar filled with drawings by children with SMA. A local raceway may hold a fund-raiser. And Ward hopes to hold a fund-raiser at Norfolk's Town Point Park.

Beyond raising money, she also hopes to publicize the drug trial to local people with SMA who may want to take part. Approximately 60 people in Hampton Roads have SMA.

Leshner is cautious about the drug trial's outcome. Even with expedited FDA approval, Gabapentin would not be available to sick children for at least two years, he said.

But Leshner respects the power of organizations such as Kindal's Crusaders.

``I'll never underestimate the power of a parent who is fighting for their child's survival.'' MEMO: WHAT DO YOU THINK?

Should the federal government help fund research on devastating

diseases, even if they affect only a small number of people?

To cast your vote, call Infoline at 640-5555. When you hear the

Infoline greeting, press 2004 to vote yes, or 2005 to vote no. You will

be asked for a brief comment.

The results of the ``Talk Back Tuesday'' survey will air tonight at

10 on Pilot 13 News. (Channel 4, 8 or 25. Check your Cox cable

listings.)

More information about Kindal's Crusaders is available by calling

488-2999. ILLUSTRATION: [Color Photo]