Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"This is one SUPER organization and a Non Profit one at that."

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Living with

Kennedy's Disease Blog

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 "I am amazed at the wonderful support that the KDA gives to the men and families affected by KD. The progress made by current research on animal models of KD and by therapeutic trials gives reason to hope that the disease that I described 40 years ago will finally be conquered."
-- William R. Kennedy, M.D.
 
Progress
 
The KDA is proud to provide information, education, and support to over 3 Million visitors.

 

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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Help Us Find A Cure!

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We are truly saddened to report the death of one of our founding members, Terry Waite. Terry made this world a better place, by bringing us all together to help find a cure for Kennedy's Disease. We send our love and prayers to all of Terry's family and friends. His wife, Susanne, appreciates the outpouring of support and requests in lieu of flowers to please send a tax deductible donation in memory of Terry Waite to:

The Kennedy's Disease Association
PO Box 1105
Coarsegold, CA 93614

For online donations, click here to use PayPal or here for Razoo 

 


 


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2015 KDA Conference Attendees

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View our 2015 KDA Christmas Newsletter with Conference Summary & Research Updates. Click here.

 


You are not alone because we are all family

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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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Together we will make a difference

 

 Spinal Bulbar Muscular Atrophy

Current Kennedy's Disease Research

Excercises that can improve swallowing in KD patients.

December 2015 - The KD group in Japan just published a study on exercises that they found can improve swallowing in KD patients. The paper can be found here. These exercises are quite straightforward and can be done anywhere one can lie down. A pdf of the exercises can be found here. The exercises are done 3 times a day, every day.


Exercise Study Results

July 2015 - The exercise trial paper "A Randomized Controlled Trial of Exercise in Spinal Bulbar Muscular Atrophy" was published on behalf of the American Neurological Association. The abstract with the results are shown below. You can read or down load the entire article by clicking here.  


Kennedy's Disease - Interview with Dr. Kenneth Fischbeck

May 12, 2015 - In this exclusive interview, Kenneth Fischbeck, MD, of the National Institute of Neurological Disorders and Stroke (NINDS) talks about the recent studies being conducted at the NINDS, in collaboration with Novartis, to understand, and find a treatment for, Kennedy's disease (spinal and bulbar muscular atrophy).  

Kennedy's disease is an x-linked motor neuron disease that affects males. Onset of the disease often begins in men aged 20-40 but it has been reported in younger and older males as well. Early symptoms include tremor of the outstretched hands, muscle cramps with exertion, and fasciculations (fleeting muscle twitches visible under the skin). Eventually, individuals develop limb weakness, often beginning in the pelvic or shoulder regions.

Click Here to watch the video

 

Click here to read more research articles

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, X-linked Spinal Bulbar Muscular

 

Atrophy, SBMA, neuromuscular disease, support group