Local group introduces Vintage Affair for MS
Julie Cawthron’s laughter fills the room as she poses for pictures. She’s smartly dressed in a navy sheath and matching jacket and wears a necklace the color of the National Multiple Sclerosis Society. That would be orange.
At one point she even poses wearing a bright orange handlebar mustache — because she’ll do that, she says, if it brings awareness to MS.
Cawthron volunteers with the National Multiple Sclerosis Society, South Central (the society’s Little Rock office) and is serving as chairman of the first Vintage Affair for MS, another way of raising awareness about the disease and money for the society. The wine-tasting event takes place Sept. 26 at Next Level Events in Union Station.
You wouldn’t know it to look at her, but the MS advocate was diagnosed with the disease in 1995 after experiencing vision problems. “MS is an invisible disease for many people,” she explains. It is an autoimmune disease where the body attacks the protective covering of the nerves in the brain and spinal cord.
“The disease affects the nerve’s coating, that myelin sheath. It’s the eating away at it, nibbling, that causes the scarring or the lesions, the sclerosis. You can have a spot here or a spot there, or there can be whole sections affected.”
She explains that it is like the cord to a lamp. The cord may look fine, but if there is a short in the cord, the lamp will flicker. It might not light at all.
“There is kind of a breakdown in communication from the brain to the body.”
It affects everyone with the disease differently. Symptoms can include numbness, tingling, blindness and paralysis. People with the disease are sometimes frustrated when they are told they look good or don’t look sick. “You can look at someone and have no idea that they are actually having difficulty with pain, excruciating pain, 24/7. For a lot of people, there are not a lot of medications that can truly touch it because it is a truly strange disease.”
Cawthron occasionally uses a handicapped parking space and people have hostilely reacted because they don’t see anything wrong with her.
“People like that are probably thinking that they are doing the right thing by protect-
ing a parking spot for a person that needs it. So you try not to get upset and use the opportunity to educate. But it’s hard.”
A couple of years after her diagnosis, she began volunteering with the MS Society’s local office. “I began at education programs helping at the registration desk, but then I leaned more toward an advocacy role, speaking at educational programs about MS and visiting with legislators here in the state and in Washington, D.C.”
In 2005, Cawthron became chairman of the government relations committee for Arkansas. “I started going to Washington each year to participate in their national public policy conference where representatives from all 50 states come together at one time, go to Capitol Hill dressed in orange and visit with our legislators.”
As an advocate, she wants people to know that while MS is a disease that stops people from moving, the organization is racing toward a scientific solution, research that requires a lot of resources.
“Research, I believe, is the No. 1 factor for hope. Because if we don’t continue research, if we don’t find new treatments in addition to symptom management medications new to the MS population – that’s not a good outlook for people with MS.”
When Cawthron was first diagnosed, there was one medication available only to “winners” of a lottery. Today, there are 10 MS-specific disease modifying medications. That’s important, she says, because of the variety of ways the disease affects people. “The disease is that different for everybody, and that’s why the MS society focuses on research, research, research.”
The fundraiser is just one way the group raises money for research as well as programs and services in Arkansas. There’s the Bike MS: Rock’n Hot Ride, a two-day bike ride traveling Saturday from North Little Rock to Hot Springs Village and returning today.
Cawthron, who is also on the local MS Society’s Arkansas Leadership Council, volunteered to chair the fundraiser partly because it will also honor Rick Blank, who will step down as council chairman.
“I believe in all the work Rick has done and I believe it is a wonderful opportunity to recognize him and thank him for everything he has given. He has been a tireless advocate.”
In addition to honoring Blank with the Hope Award, the new event will include a VIP lounge, live and silent auctions, wine tasting, a full bar and plenty of food.
A Vintage Affair for MS will be held at 6 p.m. Sept. 26 at Next Level Events at Union Station. Tickets are $100 and can be bought at the door or a vintageaffairms.org or by calling Tina Ward at (501) 663-6767, Extension 35307.