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Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

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.

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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.

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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.

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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.

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Every few days a baby boy is born with this DNA defect


baby_boyThe defect is in the ‘X’ Chromosome and it makes testosterone almost a poison to his body. Since there is no treatment or cure for this defect, he will grow up not knowing when the disease will begin to attack his motor neurons and muscles. Often it begins with painful cramping and uncontrollable muscle spasms. Over time it will attack most of his muscles often making it difficult to even swallow liquids.


As the disease progresses, the motor neurons will begin to die and the muscles will waste away. Eventually, he will most likely require a wheelchair to move around and possibly even a neck brace to hold his head up. Many will be forced into early retirement and almost every one of them will worry about the financial welfare of his family. Pneumonia will become as feared to him as any disease because of his inability to clear the lungs of phlegm. If he becomes a father, he will live with the knowledge (and often with feelings of guilt) that his daughters are carriers of the defect and will pass it on to future generations of his family.


The disease is Spinal Bulbar Muscular Atrophy; more commonly known as Kennedy's Disease.

 

Kennedy’s Disease Knows No Boundaries...

boundaries… It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers.

This neuromuscular disease is frequently misdiagnosed; often as Amyotrophic Lateral Sclerosis, (also known as ALS or Lou Gehrig’s Disease.)

 

 


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

You are not alone in your quest for a treatment and cure!

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. While we pursue other funding opportunities, we need researchers to continue their work, and it is only the KDA that makes funding this disease a priority.


You already know that Kennedy’s Disease is listed as a rare disorder, which means very little money is available for research. The Kennedy’s Disease Association (KDA) was established to inform and enlighten the medical community about the disease; provide support for those living with it; and help fund Kennedy’s Disease research.

Every day small groups of dedicated researchers around the world are trying to find a treatment and cure for this disease. Unfortunately, because the disease is considered rare, the much needed funding for research of Kennedy’s Disease is not readily available. That is why we need your help.

We are the Kennedy’s Disease Association (KDA). We are a California corporation recognized under the United States Internal Revenue Code 501(c)3 as a publicly supported non-profit organization. The KDA represents those affected worldwide. Our purpose is to educate others about this disease and to support further research. We are also a vital link for patients, providing support, giving them the latest research information and hope for a healthy future.

Because the KDA is an all-volunteer organization, 92% of every dollar spent goes towards Kennedy’s Disease research and education.

Every few days a baby is born with this DNA defect. If this were your child, wouldn’t you do just about anything to make certain researchers have enough funding to find a cure? Please support our efforts by making a charitable donation today. Your contribution may keep a wheelchair out of a child’s future.


research2Our 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 and let their patients know we are here to help them.

Research is crucial to finding treatments and a cure for this disease that has affected all of our lives. Unfortunately, the federal government has reduced the funding available for medical research. As a result, research projects for Kennedy’s Disease, along with other lesser known illnesses are being seriously under-funded.


Because of your continued support, the Kennedy’s Disease Association has awarded $280,000 in research grants. Because of the continued efforts of many dedicated researchers around the world, those of us living with Kennedy’s Disease are much closer to seeing a treatment for the disease.

Further information can be found at the National Institute of Neurological Disorders and Stroke (NINDS) Kennedy's Disease Information Page.


families_generationsWorking together to find a cure ...
For our generation ... and for our children
and our grandchildren

 

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