By Jeanne Sager
SULLIVAN COUNTY — If you’ve never heard of lupus, you’re not alone.
Consider yourself notified.
A loyal group of more than 20 Sullivan County residents has spent three years beating the bushes for funds for the annual Walk for Lupus in New York City.
The first year, they raised just about $1,000.
Last year, the number was around $4,700.
This year, the sky’s the limit.
Organizers of any volunteer effort know well the trouble of calling on people to help a cause year after year.
Not Karen’s Crew. In year three, they’re still going strong. Their numbers are growing, and their efforts are paying off.
There are already 24 people signed up to walk with Karen’s Crew on Saturday, Oct. 11 at the annual Alliance for Lupus Research Walk at the South Street Seaport.
They know more are coming –  and if last year’s sudden burst of registrants in the last two weeks before the walk is any indication, the final tally will be much larger.
So what’s keeping them together?
Karen Birney.
The Narrowsburg mom – and soon to be grandma – has suffered two strokes in the last year that took her ability to work and pushed her off her feet and into a wheelchair.
Lesions on the left side of her brain, combined with the strokes, forced her to undergo therapy to train the right side of her brain to perform the tasks the left side was built to do.
Doctors told her it would take awhile to process people’s questions, for her brain to come up with an answer.
Yet, besides a shrug and admittance that “I don’t do so well with numbers these days,” Birney is sharp as a tack.
Sharp witted too.
Sitting on the front seat of the family’s car while her friends perched on various spots on the ground, Birney turned to two women teasing one another.
“Would you two knock it off,” she said with a laugh. “See, they miss me at work – I was like the office mom!”
Birney was diagnosed with lupus in her mid-30s, but doctors have done studies on her body and medical history to determine the disease probably began its attack at age 11.
Classified as an auto-immune disease, lupus can affect any part of the body. Essentially, the immune system, meant to fight off infection, instead turns on the body’s own cells and tissues.
It wages a war on the body, one that researchers have yet to understand. While they work to find a cure, the suffering grows.
In the past four years, the Department of Health and Human Services estimates the number of Americans suffering from lupus skyrocketed from 239,000 to 1.4 million.
There are now more Americans suffering from the auto-immune disease than leukemia, muscular dystrophy, cerebral palsy, multiple sclerosis or cystic fibrosis.
Well-known diseases, says Nancy Esposito, the de facto leader of Karen’s Crew. Yet, few people have heard of lupus.
“When we were setting up and doing our fundraising, it was surprising how many people would come up and say, ‘You know about lupus?’” said Pat Grimley.
A former co-worker of Birney’s at Frontier Insurance in Rock Hill, Grimley’s knowledge of the disease pre-dates the women’s friendship.
Her sister is now 58, but doctors estimate she has had lupus since she was a child. Like Birney, Grimley’s sister was diagnosed in her 30s.
“She functions really well, but I know there isn’t a day when she isn’t in pain,” Grimley said with a sigh. “You wouldn’t know it – she wouldn’t tell you.”
Watching Birney struggle over the years, watching her body deteriorate, Grimley was struck by the effects lupus can have on the body – effects she says she worries her sister will one day encounter.
That’s why she started walking three years ago. It’s why the entirety of Karen’s Crew started walking.
They care about Karen, and they care about an estimated 1.4 million people who live everyday in pain.
It’s why they’ve lobbied to have paper footsteps sold at Second to None Pizzeria, the White Sulphur Springs Inn, CJ’s Deli in Youngsville, Welsh’s Cabin in Callicoon Center, the Bank of America Narrowsburg branch, the Catskill Regional Medical Center cafeteria and the TD Banknorth in Liberty.
It’s why they sat out in the sun at the Liberty Fourth of July Festival and on the night of the Sullivan West High School spring concert.
They’re looking for money to help the search for the cure – all donations go straight to research through the Alliance.
“There’s no executive padding his pockets with this money,” said Mary Feusner, a soccer coach at Tri-Valley Central School who signed on to the fight because of the many people she knows with lupus.
Her varsity girls’ soccer team will throw a penny social on Saturday, Sept. 20 at the school at 6 p.m., and a table will be set up to hand out information about lupus and solicit donations for the cause.
Frontier Insurance will allow its annual bake sale once again on Wednesday, Oct. 1, with Birney’s old friends and co-workers putting up outrageous sums for a batch of brownies just to help her cause.
Finally, of course, there’s the walk. They’ll go 3.1 miles around the South Street Seaport in the hopes that the money they raise will keep Birney cracking jokes and being the kind-hearted mom among this close-knit crew.
To get involved, head online to walk.lupusresearch.org. On the site’s New York City walk section, click on “find a team” and select “Karen’s Crew.”
Donations can be made right online as well or sent to Nancy Esposito, P.O. Box 113, White Sulphur Springs, NY 12787.
Business owners interested in selling footsteps or anyone planning to donate can give Esposito a call at 292-2683.