by Alyssa Quintero

Kids with neuromuscular diseases dream about it year-round. Some say it’s better than Christmas. Some say it’s changed their lives. Almost all agree it’s the best week of the year.

It’s MDA summer camp — celebrating its 50th year this summer.

Each year, MDA sends more than 4,000 youngsters with neuromuscular diseases to some 90 fun-filled, one-week camp sessions at some 80 locations nationwide. Campers between ages 6 and 21 enjoy activities specially designed for their abilities at no cost to their families. It costs the Association $600 to send one child to camp.

“Whether in Alaska or Hawaii, California or New York, MDA camp is a place where barriers simply don’t exist,” MDA President & CEO Robert Ross said of the program he helped to start in 1955.

In 2004, MDA camp sessions served 4,090 campers. In addition, 4,708 volunteers contributed their time.

MDA campers escape from a world that seems to have been designed for everyone else. At summer camp, kids discover a world created for them, and meet many other kids sharing the same needs.

Stephen Bailey, 38, of Baltimore attended his first camp at age 10 in 1976, and went to camp for 11 summers.

“It’s a family atmosphere,” Bailey, who has Duchenne muscular dystrophy, said. “All of the campers are dealing with similar difficulties, but it doesn’t really matter because you look beyond the disability.”

Former MDA National Goodwill Ambassador Christopher Rush, 28, of Ann Arbor, Mich., attended MDA summer camp for five years beginning in 1991 and wouldn’t trade the experience for anything.

“It was a time when I didn’t have to worry about being judged by others for my disability,” Rush said. “I got to be around other people, and we all had a good sense of humor about our situations.”

'Where the Green Grass Grows'

During the summer of 1955, 16 youngsters with muscular dystrophy and some MDA staff members set off on a new, exciting journey, ultimately establishing one of MDA’s most valuable programs.

The first MDA summer camp was initiated by five MDA chapters in New York City as an experiment
in opening new areas of experience to children with neuromuscular diseases. The small group boarded a bus from New York City to Camp Sussex in Sussex, N.J., without knowing what to expect.

“In the 1950s, far from being mainstreamed into regular schools and various avenues of public life as is often the case today, children with disabilities tended to stay home, away from the public and their peers,” Ross said.

MDA recognized how isolated these children could be. “That kind of social isolation was as devastating to the heart and soul as the more obvious effects of muscular dystrophy and related diseases were to the body.”

In his first week of employment with MDA, Ross accompanied the 16 campers, and produced an educational film called “Where the Green Grass Grows” to document the experience.

“Since summer camp began 50 years ago, the ‘experiment’ we undertook in 1955 has become a time-honored part of MDA’s program and an unforgettable experience for all concerned,” Ross said.

MDA’s summer camp program has flourished over its five decades. In 1968, some 1,000 campers attended, and by 1974, more than 2,500 children attended 59 camp sessions at 45 campsites in 33 states. MDA sent more than 4,000 campers to 100 sessions in 41 states and Puerto Rico in 1984. By 1991, MDA reported an estimated 4,529 participants in the summer camp program.

Nearly 200,000 youngsters have attended MDA camp since it began.

Summer Camp: Then and Now

MDA summer camp — then and now — provides campers with a new outlook on life. In 1955, the children’s physical weaknesses gave way to discovery of their inner strengths. The same will be true in 2005.

Gradually, MDA summer camp offered youngsters access to a growing range of activities. In the early years, some campers were housed in tents, as cabins were a rare luxury at the time.

The first camp that Lola Lucas, MDA National Goodwill Ambassador in 1961 and 1962, attended was Camp Grassy in southern Illinois. In 1961, the campers stayed in a permanent structure that had a hard floor and looked like a screened tent on the outside. At another camp, she remembers staying in cabins, which “were much more civilized.”

Robin Jones of Baltimore, who started as a counselor in 1975, also finds today’s camp environment more “kid-friendly and more muscular dystrophy-friendly.” Cabins have been made more accessible by ramps, and there are more activities and more ways for the children to participate.

For example, craft tools and adapted sports equipment have advanced, and the children are more inclined to participate in many activities rather than watch others do so, she said. Wheelchair users or not, campers play softball and soccer, swim and canoe, and ride horses.

Jennifer Lopez, MDA Associate Director of Health Care Services, agrees. “As we have grown with accessibility issues, the activities have grown and evolved as well, depending upon the camp facility.”

Longtime camp volunteer Cliff Lawhorn of Silver Spring, Md., said summer camp hasn’t changed much. He finds that “the kids are much more active now than back in the late 1970s.”

At today’s camps, popular activities include fishing, boating/canoeing, jet skiing, horseback riding, adaptive archery, wheelchair soccer, baseball and swimming. The camps also feature some less physically demanding programs like arts and crafts and talent shows.

Special guests from the ranks of MDA sponsors, such as fire fighters and Harley-Davidson riders, add to the campers’ overall experience. The Harley-Davidson riders visit many camps, giving sidecar rides and leaving some temporary tattoos and Harley gear with the kids.

For Armand Legault, a retired Connecticut tax auditor, the look of camp or the activities may have changed somewhat over the decades, but the underlying theme remains the same.

“Camp is still so important because it gives the campers a sense of learning in terms of how to share and how to have patience. It's a great chance to learn about what life is really like,” he said.

Legault attended a camp in Newington, Conn., in 1955 at age 6, with MDA’s help. When he was about 10, he participated in another camp program at Camp Newhoca for three weeks, which included three days of camping in the woods. The campers’ mission was to build a wooden bridge over a creek, ensuring that his wheelchair could cross the bridge without its falling apart and without Legault falling in the creek. (Legault’s experience was funded by MDA, but the camp wasn’t run by the Association.)

“The test of survival was incredible, and our success in surviving the three days in the woods is what taught me how to be successful in my life,” Legault said.

This summer, Legault, 55, plans to be married at Camp Harkness, where he attended an MDA camp.

Why We Love Summer Camp

As in 1955, campers today often return home from MDA summer camp with a renewed sense of accomplishment and self-esteem, and they form friendships with other campers and volunteers that last a lifetime.

“I made a lot of new friends, and the whole experience was memorable,” said 1985-86 MDA National Goodwill Ambassador Ben Teraberry of Chandler, Ariz. “I was very nervous the first time I went to camp because I had not been away from home or my family before. But, any fears I had were quickly eliminated. I don’t remember ever not wanting to be there.”

“Disability issues were a whole lot different back then,” said Lola Lucas, who attended her first camp at age 7. “It was a great opportunity to be around other children with disabilities. It was kind of like a support group. It was the place where I realized I was not alone.”

Lucas attended camp until age 14 and has fond memories.

“I still remember raising and lowering the flag, and learning camp songs. My husband never got the chance to attend any kind of camp when he was younger, so I taught him all the songs. Forty years later, we’re still singing those songs,” Lucas added.

Eddy Glattstein of North Bergen, N.J., first went to MDA summer camp in 1996. Glattstein, 17, said, “I enjoy the swimming and playing sports the most. Being at camp gives me a sense of freedom and independence.”

Fellow camper Lee Chamberlain of Maplewood, N.J., echoed the sentiment.

“People often feel isolated because of their disabilities, but camp is a chance to be surrounded by friends just like me 24/7,” Chamberlain said.

Chamberlain, 19, enjoys football and hockey activities and is ready for camp 2005. “Summer camp is a great experience because you get to meet new people, and I wish it could be even longer than a week.”

He added that the week helps him get ideas about new adaptive equipment and learn how others are medically managing their conditions.

MDA’s 1987-88 National Goodwill Ambassador Mike Neufeldt fondly remembers the dance at the end of camp week and the surprise water attacks on neighbor cabins. But, looking back, Neufeldt thinks camp meant much more.

“Camp was a lot of fun,” Neufeldt said. “It was a good time to see that I wasn’t the only person going through what I was going through with muscular dystrophy. We were all going through similar things, but we weren’t on the outside looking in anymore.”

Friends Forever: Campers and Volunteers

Camp volunteers also reap personal rewards. Volunteer counselors, many of college age, provide campers with round-the-clock care and attention. The job makes physical and emotional demands, but the bonds that develop between the campers and their counselors are priceless.

“The activities were a lot of fun, but really it was the people, the counselors that were fantastic,” Teraberry recalled.

Glattstein added, “Camp is great because of the fun and friendly staff, and it’s easy to relate to the counselors because they are young, too.”

Robin Jones has been a counselor at Camp Maria in Leonardtown, Md., since 1975. She’s set for her 30th MDA summer camp in June and is often referred to as the “queen of the camp.”

“Camp is just so important to me,” she said. “Volunteering at camp certainly makes me more aware of how much we take for granted on a day-to-day basis. I really do appreciate my life more because of the experiences I have had over the years.”

Lois West, a 30-year member of MDA’s Board of Directors, became involved with summer camp when someone asked her to help in the early 1960s. In the late 1960s and 1970s, West helped organize and direct MDA’s camp at Winder, Ga., which was among the few accessible camp locations. She later became director of the MDA summer camp in York, S.C., where her three children and future daughter-in-law volunteered.

“When I went to my first camp, I immediately noticed the wheelchairs,” West said. “But after a while, I didn’t notice them anymore. I just noticed the kids and their wonderful personalities.”

West calls the summer camp program a crucial MDA service because camp affords children the opportunity to be on “equal footing with other children.”

“Everyone is the same, and no one is handicapped,” West added. “It’s one week where the children have a marvelous time, their parents have a week off, and the volunteers get to learn new things that they would not normally be exposed to otherwise.”

Because of the one-on-one counselor-to-camper ratio, the campers often develop close relationships with their counselors, and returning campers often request the same counselor they had the previous summer.

Summer Camp's Legacy

Since 1955 when 16 youngsters with muscle disorders descended upon Camp Sussex, MDA has built bridges and knocked down barriers for youngsters with neuromuscular diseases by providing an unforgettable week at camp.

“Summer camp always was something to look forward to every year,” Rush said. “I wasn’t interested in going to camp at first. I had to be convinced by other people that it would be a good thing to do. Had I known what it was going to be like, I would have started going to camp much earlier.”

“It is an important service that MDA continues to offer,” MDA’s Lopez said. “Our campers are living with something very difficult every day, so it’s important to have that week of fun among their peers.”

Summer camp is a place where strangers become friends, and it provides campers and volunteers with a week to laugh, to smile, to achieve, to renew old friendships and to begin new ones.

Teraberry said, “Summer camp is a fantastic opportunity for anyone to have his or her spirits lifted and to get outdoors in a way that is difficult to do on a daily basis. All these years later, I still have such fond memories of camp that it is hard to put into words how much it really meant.”

Legault said, “I have yet to see one kid not make a friend at camp. I developed a friendship with someone in 1955, and we still call each other four or five times a year to see how the other is doing.”

In 2005, summer camp will remain a place where friendships, acceptance, personal growth and inspiration abound.

“It is an experience that will last the rest of your life,” Bailey echoed. “You really do get more out of it than you put into it.”

MDA summer camp may have started out as a radical experiment 50 years ago, but it quickly became a magical place that brings smiles, laughter and hope to everyone involved.

Neufeldt summed it up: “There are few positives about having MD, but if there is one positive, it is the one week that kids spend at summer camp… It truly is the best week of the year!”