Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am very glad to see that you have added the personal stories, they are a great help. They give an outlook on what to expect with such a disease. It makes me proud to see people who are willing to express and share their stories with the world, keep up the good work!"

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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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Update your Contact Information in the KDA Distribution Database

 If your email address, physical address, or name has changed since joining the KDA, please update the KDA distribution database so you will continue to receive relevant information regarding:

  • Kennedy's Disease Research
  • Clinical Trials
  • KDA Newsletters
  • Upcoming Chat Room Guests
  • Conferences and Educational Symposiums
  • Other KDA News

For your security, please use the following link to update your personal profile information:

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Also, if your email address or name has changed since registering for full access to the KDA website, please go to the KDA HOME page, then click LOGIN in the Main Menu on the left. After logging in, click on the Update Profile button on the right. Update your profile information and then click SAVE.

If you have any questions or comments, feel free to Contact Us at any time. We look forward to hearing from you.

Thank you

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

The 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.

Since the disease is very rare, it will often be misdiagnosed as Amyotrophic Lateral Sclerosis or ALS.  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.  And, if he becomes a father, he will live with the knowledge and often, the feeling of guilt, that his daughters are carriers of this 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.  Every day small groups of dedicated researchers around the world are trying to find a treatment and cure for this disease.  Unfortunately, funding for research of rare diseases like Kennedy's Disease has been drastically cut over the last few years.  That is why we need your help.

We are the Kennedy's Disease Association. We are a California corporation recognized under the United States Internal Revenue Code 501(c)3 as a publicly supported non-profit organization.  Our purpose is to educate others about this rare disease and to support further research.  Ninety percent (90%) of every dollar donated goes towards Kennedy's Disease research and education.