The Daily Sentinel
Bicyclists embark on annual journey to raise awareness about Huntington’s disease
Sunday, June 05, 2005
By ANN WINTERHOLTER
Along a Connecticut road, a man pulled up next to the bicycling Marie Nemec and yelled, “Hey lady, you better watch out! You’re going to get runned over!”
“Mom, you are crazy,” said Charlotte Reicks’ oldest son, afraid that her cross country bicycling would land her in a ditch.
But over seven years, covering more than 12,000 miles and through 31 states, neither Nemec, 61, nor Reicks, 69, have been “runned over” or put in a ditch.
Instead, the two Grand Valley women have raised awareness and more than $140,000 for research into a little-known degenerative brain disorder called Huntington’s disease.
On Saturday , Nemec and Reicks, began a 1,000-mile ride from Wilmington, Del., to Atlanta, where the 20th annual Huntington’s Disease Society of America Convention begins June 24.
They’ve named their ride “Coastin’ for HD” and they want to raise $30,000 for Huntington’s.
It is their seventh trip, an annual quest that began by pedaling from California to Washington, D.C., in 1999.
“Riding across America was nothing I had as a goal or a dream,” Nemec said.
She’s not a “phony” cyclist, but it’s not her forte.
She isn’t good at riding up hills or standing up on a bike and she doesn’t go fast, Nemec said.
Reicks is the better cyclist. “She’s the Energizer Bunny,” Nemec said.
Both Nemec and Reicks agree their rides are not about adventure, although they’ve had some, such as the time Reicks’ bike trailer got clipped by a truck in Georgia.
It’s also not about seeking a cure for themselves or their relatives. There is no Huntington’s disease in their families.
They ride for other people and other families and to put their Christian faith in action.
“I’ve met people ... many women I can think of and all their children have Huntington’s,” Nemec said.
Nemec met a woman at one of the society’s conferences. Her husband had Huntington’s and she had already lost two of their three sons to the disease.
Nemec and Reicks also ride for families such as that of a man who drives to Grand Junction from Collbran to attend Huntington’s disease support group meetings each month. He has lost several siblings, nieces and other relatives.
There is no treatment or cure at this time for the brain-deteriorating disease, which can be genetically passed from parent to child.
Huntington’s is one of those “orphan” diseases with no Lance Armstrong figure, Nemec said.
For famous names, there’s Woody Guthrie, who wrote “This Land Is Your Land.” He died in 1967.
Shana Martin, a fitness model and lumberjack athlete who participates in the logrolling events at the Great Outdoor Games, is another sort of famous name.
Martin’s mother is in late stage Huntington’s and Martin is at risk for having the gene for the disease, according to Martin’s Web site, www.shanamartin.com.
Since Huntington’s is so devastating, Nemec is glad there are few “poster boys.” Still, fewer people hear about the disease and it doesn’t get much financial support for treatment and cure research, she said.
While not famous, Nemec and Reicks do their best to fill that gap in support through their rides and by raising awareness about the disease.
They’ve also discovered they make a good partnership on the road.
Reicks is single, a grandmother and has her own business as a medical transcriptionist. She runs two miles nearly every morning. She only drives her car Sundays and the rest of the week she’s on her bike. She puts about 3,500 miles on her bike every year delivering her transcriptions around town, she said.
Nemec is married to Ron Nemec and doesn’t have grandchildren, yet. She sometimes does delivery work for Johnson’s House of Flowers and has made and sold hundreds of hair scrunchies. Much of her time is spent doing work for the local Huntington’s support group. She loves to quilt and even made a queen-sized quilt out of T-shirts from past rides.
How they got involved with Huntington’s “all seems very random,” Nemec said. “It really has changed my life.”
In 1996, Nemec said, the Internet was still a fairly “new” thing to many people and while over at a friend’s home she spotted the book “A Christian’s Guide to the Internet.”
“I was looking through it and I came to something about the Christian Writers’ Group,” she said.
Nemec subscribed to the group and a year later met Carmen Leal, a Florida woman, in a discussion on the site.
“We got to be pretty good friends,” she said, and it came out that Leal’s husband had Huntington’s.
Leal was in the process of compiling a book, “Faces of Huntington’s,” and she sent a section to Nemec to look over.
Leal self-published the book in 1998 and wanted to have copies available at the society’s convention in Denver that summer. Nemec offered to store boxes of the books at her home, which at that time was in Colorado Springs.
In June 1998, she loaded up the books, drove to Denver and finally met Leal face to face.
She helped Leal sell her books and “God love her, she volunteered,” said Barbara T. Boyle, national executive director and CEO for the society, headquartered in New York City.
Nemec put goodie bags together, got name tags ready.
“She was wonderful and she meant a lot to our families,” Boyle said in a telephone interview.
“She couldn’t believe the devastation of this disease ... she thought God put her in this spot to help HD families,” Boyle said.
Nemec also met Diane Dawson from the Grand Valley and found out about the support group she had started.
After the convention, “I just couldn’t say, ‘Oh, that’s too bad’ ... It kind of took hold of me and I had to do something,” Nemec said.
During a visit to Grand Junction, where she had lived for years after moving from California in 1977, Nemec was at a church knitting group and began talking with Eveyln Logan.
Logan told her about a coast-to-coast bicycle trip she was planning with a friend Charlotte Reicks.
Nemec, who had recently begun biking, decided to go at least part of the way. Then she decided to go all the way to Washington, D.C., to the 1999 society convention and to make it a fund-raiser.
One of her first donations was $10 from someone at Reicks’ church.
While Nemec was a newcomer to cycling, by 1999 Reicks had been pedaling about 15 years.
It began when her former husband bought a 10-speed for her for $100, Reicks said.
She rode it around her home in the country by herself and later with a friend. They went about four miles when they rode.
Then the friend suggested they bike 10 miles to Fruita and back.
“There’s no way,” Reicks told her.
“Oh, you can do it. Just keep pedaling,” the friend told her.
Reicks did it. Then she did the first Tour of the Valley ride over Colorado National Monument and realized there were better bikes.
So she got one and began riding with a group on weekends.
In 1992, she did a ride from Utah to Kansas and found she could “just keep pedaling” over mountains.
When Logan asked Reicks to bike across the United States, though, her reaction was rather like Nemec’s.
“I’ll go as far as I can go, but I might have to go home,” Reicks said she told Logan.
Reicks didn’t know a whole lot about Huntington’s when the threesome began their trip in California.
Their first evening out, they stopped for a spaghetti dinner fund-raiser and silent auction put on by a family, the wife and mother of whom had Huntington’s.
The woman was in a wheelchair and couldn’t speak.
“That was an eye-opener,” Reicks said.
She had never seen or met someone with Huntington’s, she said.
“You meet people and you just realize you want to help them,” Reicks said.
“These families are so amazing. You see so much courage,” she said. “You see so much love and commitment. It just humbles you.”
In the past seven years since that initial two-month ride, Nemec and Reicks have put together a network of Huntington’s families, churches and friends who provide a meals and beds for them on the rides.
The destination is always the annual society conventions, so their cycling routes are based on the city where it is to be held.
The 2000 ride was another coast-to-coast trip from California to Florida. That was the year Nemec was given the Hero of the Year award by the society.
“That was totally a surprise to me,” Nemec said.
In 2001, the year Nemec moved back to Grand Junction, the convention was in San Diego. They rode down the West Coast from Vancouver, Canada, to the Mexican border.
They named their 2003 ride “Trek Across Texas,” ending in Houston, and in 2004 it was “Kick HD on Route 66” as they went from Albuquerque, N.M., to St. Louis.
Along their rides, they hand out pamphlets and talk to people about Huntington’s.
One afternoon they stopped in a small town in Kansas. Reicks was on the phone calling a college up the road where they thought they might be able to spend the night.
Nemec was standing around, waiting, when a car pulled to the curb and two older men in overalls got out.
“I just thought, ‘I’ll give them a pamphlet,’ ” Nemec said.
She said a quick prayer and walked over.
“Oh, my wife died of Huntington’s disease,” one of the men told he after she handed him a brochure.
“We were pretty much shocked,” Reicks said.
On that ride, they had gone across several states without finding anyone who knew anything about the disease.
“To think we’d find somebody in this little spot,” she said.
The man, Vown Epperson, also had a daughter with Huntington’s who was in a nursing home. They talked with him and told him about the society. Nemec has talked with him several times on the phone since then.
“That just gave me so much impetus to ride,” Reicks said.
“They’ve met families as they travel that didn’t even know that we were here,” Boyle said. “They’ve opened up support and hope.”
“They aren’t 18 or 20, it takes a toll on them” but they do it anyway, Boyle said.
For the first few years, Nemec and Reicks carried all their gear behind their bikes in trailers.
There was a beautiful Saturday morning in Georgia when Reicks had her accident.
She wasn’t paying attention to her surroundings, other than listening to the birds singing in the countryside. Nemec was a ways ahead of her.
Suddenly there was a truck beside her. It clipped her trailer and sent her to the ground.
The man rushed out of his truck to check on her. Other than a nosebleed, she thought she was OK. No bad scrapes, and her bike was fine. Then she ran her tongue over her teeth and discovered a tooth was gone.
Reicks sent the man ahead to get Nemec while she searched the ground for her tooth, which she found and put it in a bag.
When Nemec and the man got back, they put their bikes in the truck and he took them to the hospital in the small town nearby. The doctor found that the roots of the tooth were intact, and he couldn’t put the tooth back in.
Reicks needed a dentist, but for that she would need to go to another town.
Fortunately, the brother-in-law of the man who clipped her was in town and was able to take them to a larger town the next day. Reicks made sure to keep the tooth on ice, just in case a dentist would be able to reattach it.
When she finally got to a dentist, Reicks proudly handed her the bag with the tooth.
“I hate to tell you this, but this is not a tooth,” the dentist said.
It was a nice piece of gravel.
“She built me a tooth,” Reicks said.
It got her through the rest of the ride and several months later she had to get implants for four teeth.
The blessing out of the whole thing was, the insurance of the man who ran into her paid for everything, Reicks said.
“I still have that rock,” she said.
In 2002, Nemec and her husband bought a van because she wasn’t able to ride as much anymore. He drove as support crew for them that year and in 2003 Nemec and Reicks devised a new riding system to include the van.
Reicks calls it “hopscotching.” Nemec thinks of it as leapfrogging.
The first cyclist begins riding while the other drives the van ahead and parks it along the road. That person starts riding from there on. When the first cyclist reaches the van, she loads her bike and drives beyond the second cyclist, parks the van and bikes on.
On the ride through Texas, they were riding over rolling hills on two-lane roads past farmhouses.
Reicks had biked to the van and was driving it up the road when a pickup behind her began flashing its lights, the man behind the wheel motioning her over.
“Oh, no, I’m in trouble,” Reicks remembered thinking. “Did I leave the back open? Is this safe?”
A big young man got out of the truck and walked over to the van.
“I was just wondering what you all were doing out here,” he said to her.
Apparently, he was curious about the van with its signs about Huntington’s, which has been parked by one of his fields.
Reicks gave him a pamphlet about the ride, explained what Huntington’s is.
The man told her to wait a minute. He went back to his truck, came back a few minutes later and handed her a piece of paper.
“He had written a check right on the spot,” Reicks said.
It was $150 for Huntington’s. Nemec and Reicks couldn’t believe it.
While the rides can be tough, there are random moments like that which make it wonderful, they said. There’s also some humor.
On their way into Herfourd, Texas, Nemec saw the sign she’s never forgotten. “The home of the Hostile Herd and the Lady White Faces,” it read.
“You have never seen America until you are on a bike and you see a sign like that,” Nemec said. “I just thought that was hysterical.”
Over the years, they have had several guest riders along.
At the 1999 convention in Washington, Nemec was approached by a young man from New York named Kevin, who was at risk for Huntington’s. He wanted to ride across America with her the next year, he said.
Arrangements were made, but as the year went on it became clear Kevin was not going to be able to ride, Nemec said.
Reicks was not able to ride in 2000, and Nemec didn’t want to go alone. A friend of Kevin’s mother stepped in and said he would ride, she said.
Scott Springer rode about 20 miles or so in New York then got on a train for California. They met for the first time at the train station, then began a two-month ride to Florida.
“I had never even seen Scott. It was really kind of amazing,” Nemec said.
Another guest rider was named Shane. He rode with Nemec and Reicks for about a week in 2001.
“He’s had (Huntington’s) since he was a child,” Reicks said.
“We see him every year at the convention,” she said. “It’s so sad. He’s so young.”
Because of Huntington’s, he can no longer ride his bike.
This year, a man with Huntington’s called them about guest riding. Unfortunately, he died last month, they said.
On their way to Atlanta, Nemec and Reicks said, they looked forward to seeing some of the people they’ve met and stayed with on past rides.
There’s a North Carolina woman they’ll visit with three of four children with Huntington’s.
It’s those people who keep them going when the pedaling gets hard and the weather isn’t great, they said.
As they bike, “we pray for the families we’ve met,” Nemec said.
Such as a family in Louisiana, who one year passed them around from member to member to friends clear across the state.
“I came back with a renewed sense of how great Americans are,” Reicks said. “People have such great hearts ... of course it helps that we’re little old ladies.”
Huntington’s is a terrible disease, but working for a cure has been so rewarding, Nemec and Reicks said.
“I never thought I would do this in my wildest dreams,” Reicks said.
“I think really if you look at it, we are just average people doing something extraordinary,” Nemec said. “It has just given me a different perspective.”
Ann Winterholter can be reached via e-mail at email@example.com.