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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They say "Laughter is the Best Medicine"...

coakleyJohn A. Coakley, Sr. is an individual living with Kennedy's Disease.  His sense of humor shows through every conversation or email he writes.  He has written several humorous personal stories of what it is like living with KD.

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Visitors from 161 countrieshave explored our website this year

 

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*Data supplied by Google Analytics for the period 01/01/14-09/19/14

You can share your experience with the KDA with others by writing to us at Contact the KDA  or by clicking on Testimonials below and writing a rewiew on Guidestar.

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More KDA Testimonials

"I have only recently been diagnosed with Kennedy's Disease (mis-diagnosed Muscular Dystrophy in the 1980s) and I went searching the internet trying to find out what I could. I quickly found your site and am having a great time informing myself!!!
Thank you for being in cyberspace to meet me at a time of need."

-- Kevin Brennan, Australia

 

"I thank God there are so many who will share their story to give others hope! My brother was diagnosed with SMA in 1996 and today after a subsequent visit to the doc, they now believe his disease is Kennedy's. I am relieved to know that it's similar to the SMA diagnosis. This younger brother of mine is a very special person and I'd like to have him around for awhile. Thanks to all who have shared their stories."

-- Sharon Durda, Ohio, USA

 

"My husband was diagnosed with KD last year. He is coping with the thought of having to use a wheelchair in the future. I think this is a good site to have, because it has some encouraging words. Thank you for having it available."

-- Julie Nolte, Minnesota, USA

 

"My father passed away on September 10, 2002 from respiratory distress, brought on by advanced KD and lupus. I miss him very much. He was in the Ottawa Civic Hospital for almost a month before passing, and almost all of the nurses and doctors did not know about Kennedy's Disease. I want to thank the creators of this website. I referred them here."

--  Elisse Meshake, Ontario, Canada

 

"Finally diagnosed with KD after 3 1/2 years of testing. Thanks to a wonderful Neurologist and General MD who were equally driven to determine my ailment. That was 4 years ago, and am continuing to walk (slowly) and take care of chores around the house. Thanks to a wonderful family and stubbornness on my part.. I might be slowing down, but not giving up .... Am glad to see finally information being made available about this disease.. THANKS for the website."

--  Robert Antolin, California, USA

 

"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!"

-- Jennifer Cullen, Ontario, Canada

Memorials

Associates and friends of our Association who are no longer with us and for whom we grieve and remember...


If you have a loved one with Kennedy's Disease who has passed away and would like to have them added to the memorial page, please e-mail us at Contact the KDA with the information and a picture. If you do not have a picture on your computer to send via e-mail you can mail it to us via regular US mail at the address at the top of this page and we can scan it and return the original to you.

Byron Kropf

 

 Byron Duane Kropf

 1949 - 2019

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Terry Allen Waite

Co-Founder, Past Treasurer - 2000 - 2016

1961 - 2016

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Thomas J. O'Neill

1948 - 2016

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Frank W. Barton Sr.

1944 - 2015

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Earl M. (Bud) Goodnight

1936 - 2015

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Paul-Hagenbuch

 

Paul A. Hagenbuch

1946 - 2015

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William Z. Toflinski

1934 - 2014

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Donald P. Schings

1944 - 2013

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Leonard L. Janicki

1948 - 2013

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Donald B. Hajec

1937 - 2013

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Paul Sramek Jr.

1935 - 2013

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Stanley Highe

1952 - 2012

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Ron Wiker

1940 - 2012

Past KDA Vice President - 2004-2009

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Paul Liu

1943 - 2010

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Perry Smith

1968 - 2010

 

 

 

 

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Charles Edward Rannells

1927 - 2009

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Andrew Horvath

1939 - 2008

 

 

 

 

Allen W. Larsen

 

 

Allen W. Larsen

1932 - 2008

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Abraham Torio Tandoc

1934 - 2007

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Jerrold Conrad Brown (Jerry)

1955 - 2007

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John Kopycinski

1949 - 2007

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Patrick T. Griffin

Co-Founder, Past Vice President - 2000 - 2002

1950 - 2006

 

 

 

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Denny Neu

1951 - 2006

Denny leaves behind his loving wife Janet.

 

 

 

 

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John Mengel

1934 - 2004

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Ronald (Ron) Leo Martin

1927-2003

Calgary, Alberta - Canada

 

 

 

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Roberts G. Hannegan

1919 - 2002

Palm Coast, Florida - USA

 

 

 

 

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George Liu

1946-2000

Seattle, Washington - USA

 




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