Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Every day parents-to-be wonder whether their child will be born with this DNA defect"

Our Focus Remains on Research, Education and Support

The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts. We distributed information to more than 10,000 neurologists to help them recognize clinical signs and symptoms of Kennedy’s Disease.

Will my child be born with this DNA defect?

It takes an enormous amount of money to fund research…more than any of us can afford alone, but together, we are capable of great accomplishments. We are searching for available foundation grants, but the process is lengthy. We need researchers to continue their work, and it is only the KDA that makes funding this disease a priority.

Kennedy’s Disease Knows No Boundaries...

It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers. The defect is in the ‘X’ Chromosome that makes testosterone almost a poison to his body.

What is Kennedy's Disease?

Kennedy’s Disease (spinal and bulbar muscular atrophy) is an adult-onset “X” linked inherited disease with symptoms usually beginning to appear between the ages of 30 and 50. However, onset has also been reported as early as in the teens and as late as the 60s.

Ron Wiker - 1940 - 2012

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Personal Story

My childhood was very normal in all ways. I played a lot of different sports and was average or better in most sports. In junior high and high school I was involved in gymnastics. I was a member of the Leaders Club, which was a group who were better than average at most of the exercises.

I joined the US Marine Corps while I was still in high school, but didn’t leave for boot camp until after high school graduation. I spent three years with the marines attaining the rank of corporal E4. During my boot camp training at Paris Island, S.C. I had no trouble or difficulties doing the tasks which we were to do as recruits. The obstacle course, though not a walk in the park, was not too bad.

Even during my early years I had little or no reflexes when they tested my knees or arms. No big thing because everything else seemed to be all right. I was not a big man; only five foot nine inches tall and weighing about one hundred forty-four pounds. Being slight of build, I was still very strong, being able to lift much more than my body weight.

It wasn’t until I was about forty-five years of age that I started to notice having difficulty doing certain tasks. I was building an addition to my house and I had trouble doing some of the jobs requiring me to lift or hammer above my head. At first I thought I was having back trouble which I went to the doctors for examinations. They couldn’t find a medical reason through x-rays and MRI’s to be causing my back problems. Then I thought that it must be OLD age creeping up on me. When we get a little older, how are we supposed to know what to expect from our bodies. I always said that if I knew I was going to live this long, I would have taken better care of my body.

When I started having trouble with my legs about age forty-nine, I wasn’t too concerned. When I started to have trouble with my swallowing and pronouncing certain words, I wasn’t too concerned. When I started to have trouble climbing stairs I became concerned. I went to my family doctor and was referred to a neurologist. After examination they thought that I might have a muscular disease of some kind. So, I went to the University of Rochester in N.Y. to see a Dr. Richard Moxley, III. At first they thought that I had proximal myotonic myopathy. Dr. Moxley, after reading the results of the testing at Rochester that day, thought that I might have Kennedy’s Disease instead. He referred me to a doctor Kenneth H. Fischbeck at the National Institute of Health at Bethesda, Maryland. I went to meet with Dr. Fischbeck for examination. After testing, Dr Fischbeck confirmed that I had Kennedy’s Disease. I was diagnosed with Kennedy’s in October of 1999.