‘Walk & Roll’ in Conway to help GBS-CIDP foundation

Want to take a walk or roll to help a global charity find new strides in getting its message out? Then join the “Walk & Roll” for GBS-CIDP, at 10 a.m. Saturday for 1 mile across Conway’s Riverfront Park on Elm Street.

All donations raised will benefit the GBS-CIDP Foundation International, based in Narberth, Pa., and helping people affected by Guillain-Barré syndrome, chronic inflammatory demyelinating polyneuropathy, or related syndromes such as multifocal motor neuropathy.

Merrilyn Macurak of Conway, the Myrtle Beach/Conway chapter liaison, talked about the footwork to get the wheels rolling on this inaugural local fundraiser, with everyone welcome to walk, or roll in a walker or wheelchair. With two Labradors and a Chihuahua as her “children,” Macurak also has quite the group of cheerleaders at home to help keep her rolling in spreading the word about finding more ways to battle inflammatory neuropathies.

Question | How long has this outing for Saturday been on the drawing board?

Answer | I’ve been working on this since January. The first part was finding the right place.

Q. | How big a jackpot was lining up picturesque Riverfront Park?

A. | It’s beautiful there. When I looked at it back in February or March, it was that not pretty yet, before spring arrived. Of course, now the crepes are in bloom and the live oaks are filled out.

Q. | How did “Walk & Roll” arise as the theme?

A. | It came out of the foundation office. It's a new campaign for us to try to raise funds and awareness. Of course, the “roll” part is for people in walkers and wheelchairs, so no one’s left out. That was something important in planning this: We had to make sure the terrain was flat and suitable for people in walkers and wheelchairs. I was in the position, because I was diagnosed with GBS nine years ago, but it didn’t reach upward into other parts of my body. ... I’m not in a wheelchair anymore. I walk with a cane and wear AFOs [leg braces]. I was left with what is called drop-foot, the inability to lift foot below the ankle. I just got some movement back in toes on my left foot last summer.

Q. | What do these syndromes comprise, and at what age do they affect people the most?

A. | They really have no age limit, and they affect young and old. ... Mine started as numbness and tingling in my feet and glands, then I started falling and dropping things, and then it can move upward. ... I was lucky. The key to this is quick diagnosis.

Q. | In an age where so many maladies that affect masses of people – including pancreatic cancer and macular degeneration – and never seem to get in the front seat for public awareness, what extra efforts help the public know more about GBS/CIDP?

A. | Our “Walk & Roll” program for one, and May is our awareness month. We were granted proclamations this year from the city of Conway and state of South Carolina for May as GDP/CIDP Awareness Month.

Q. | When did the local chapter for the GBS-CIDP Foundation begin, and how many people have joined this effort?

A. | This chapter was started in January 2014. At out last monthly meeting, we had 16 members. ... We also have 250 members of the foundation within a 100-mile radius. ...

A lot of the keys to the fundraising is so we can make every sure patient and family member gets accurate diagnoses and affordable treatment, and we want to have a great support system for them.

Q. | What other important parts go into increasing research and awareness?

A. | The foundation is starting to do more grants for research. The reason there is not a cure for GBS or CIDP is because not all of us have the same trigger. ... So, if you cannot pinpoint the trigger, it makes it hard to diagnose. If you get treatment as soon as possible, it stops the movement of it upward in your body; that’s what happened to me, and I am so fortunate.

Q. | How prevalent are “Walk & Roll” events and other gatherings across the country?

A. | Every week, there’s a walk in a different city. There’s one in Huntington, W.Va., the week after ours, and one in Boston on Oct. 3.

Every two years, the foundation puts on a symposium. Next year, it’s in San Antonio, and they do programs with medical professionals, some of whom are on the board of the foundation, and some they bring in from the Netherlands, where a lot of research is done. It looks like we have funded more than $2 million in research grants. ...

To date, the foundation has already had 16 walks and raised $183,000. So far locally, for our walk, we're up to $5,100, which amazes me. We have a lot of great sponsors for the raffles. The community has really stepped up.

The awareness about GBS/CIDP is spreading, because we hear from people who say, “I knew somebody who had that.”

This story was originally published September 13, 2015 at 8:00 AM with the headline "‘Walk & Roll’ in Conway to help GBS-CIDP foundation."