Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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The KDA's mission is to inform, support, educate, fund research, and find a cure for Kennedy's Disease 

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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.

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The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts.

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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.

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

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What is Kennedy's Disease

 

Defective Gene

 

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.

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

Click-hereFor more information on Kennedy's Disease

 

Click-hereFor Frequently Asked Questions

 

Click-here For Common Misdiagnosis

 

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

It knows no boundaries

 

Every few days a baby is born with this defect

Baby Boy

 

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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For Freqently Asked Questions on Kennedy's Disease

 

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For DNA Test information

 

Click-hereFor Genetic Counseling Information

 

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

Our focus is on research

 

The Kennedy’s Disease Association (KDA) 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.  The KDA uses conferences to help those living with Kennedy's Disease to better understand the disease as well as provide additional education and support tools to make life easier.

Research is cResearchrucial 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 efforts of  dedicated researchers around the world, those of us living with Kennedy’s Disease are much closer to seeing a treatment for the disease.

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For Research Updates

 

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For Clinical Trial information

 

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

Will my child be born with this DNA defect

 

Every day researchers get closer to finding a treatment or cure for Kennedy's Disease

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.

Click-hereFor more information on Genetic Counseling

 

Click-hereFor more information on DNA Testing

 

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