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Time to give back: Patient raises funds for MDA

For some people, turning 50 is hard enough. Imagine being told you have Muscular Dystrophy on your 50th birthday. That’s what happened to Larry Haith 14 years ago on Oct. 11, 1999.

Over the years Haith has received support and services from the local Muscular Dystrophy Association office. So this year he has decided to give a little back to the organization that has helped him so much by participating in two MDA fundraisers — the MDA Muscle Walk April 26 at Arrowhead Stadium and the annual MDA Muscle Cure gala in the fall.

The diagnosis

For much of his life, Haith was an athlete. He ran long distance fun runs, took part in triathlons — races that involve running, biking and swimming — and long bike rides such as the MS 150. Suddenly he noticed his feet weren’t doing what they were supposed to do when he was running.

“My left foot began slapping the pavement,” he said in an email interview recently.

He was 48 years old when this started, and it took quite a long time and a multitude of tests including X-rays and MRIs to figure out the problem.

“I saw an orthopedic surgeon and for two years I did a lot of stretching,” he said. “Finally I was sent to KU Med for DNA testing and a final diagnosis. Prior to that my speech was slurred and I had a hard time swallowing, but I just thought it was an unexplained problem and it really did not bother me.”

During the past 14 years he has learned to live with the disease, such as altering his workout routine.

“In lieu of running outside, I run in the pool. I get in the deep end and run in place, off the floor. I run as hard as I can for 45 minutes using several different positions to work many different muscle groups,” said Haith, a member of Kehilath Israel Synagogue.

Haith benefits from workouts provided by Tisha Polsinelli, his personal trainer at the Jewish Community Center.

“She continually gives me new ideas to do what I can do, stretches me and makes sure I do not overdue it. I have a tendency to push too hard,” he said. “I do high reps on the weights and just try to maintain.”

Of course he’s had some setbacks through the years. For instance the disease has made it hard for him to play with his grandkids the way he would like. His wife Randi also has to help him do things now as well.

“She has to help me open jars and button my shirt, things like that. But I am lucky, I think,” he said.

The MDA Muscle Walk

This is the first time Haith has decided to take part in MDA fundraising activities. He said it’s because it’s time for him to give back to the organization that has helped him.

“The MDA family is a remarkable group of people. I have really grown to appreciate them more and more,” he said.

He started these efforts a couple of months ago, seeking funds as well as recruiting people for his Muscle Walk team through his extensive list of email contacts.

“First and foremost, I hope you’ll join my team. But if you can’t, please do anything you can — register as an individual or make a donation on my behalf.

Haith has set a fundraising goal of $3,000. He has designated all the funds he raises to stay in Kansas City to help others with Myatonic Dystrophy (MMD), which is one of the 43 different types of MD and the form he has. MMD causes weakness of the voluntary muscles, although the degree of weakness and the muscles most affected vary greatly according to the type of MMD and the age of the person with the disorder.

“The money we raise will help support MDA outpatient clinics, repairs of medical equipment, support groups, MDA summer camp and hope through research,” he said.

Haith will indeed participate in the Muscle Walk.

“I am very lucky, I am still upright. But I do use a cane when I remember to, more as a safety precaution than anything else. However for long distance, my wife got me an electric scooter. I will use the scooter for the walk. I can go a long way without it, it’s just that I am very slow.”

As of Monday, Feb. 17, Haith was more than halfway toward his goal, having raised a total of $1,608. As his fundraising page points out, it takes $800 to send a child to MDA summer camp. A $656 donation is a dollar for each muscle in a person’s body and a $39 donation represents $3 for each healthy muscle it takes to smile.

“The researchers are so close to finding a cure. I want to show the researchers that the MDA is appreciative and wants to help. So am I,” Haith said.

Haith is happy to communicate with anyone who wants to learn more about the walk, and points out that “if my friends do not give to the Muscle Walk, they will be called for the big event,” the Muscle Cure gala later this year.

“I will be trying to sell tables and get sponsors for this really big event. If you want to hear more about these events and the opportunities to sponsor either or both of them, please contact me at This email address is being protected from spambots. You need JavaScript enabled to view it..”