Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I found the superbly informative KDA site intially by googling Kennedy's Disease. The chat rooms are very informative and inspiring."

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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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2019 KDA Conference - InformationRegistration. 

Agenda.


  • In Memorial

    Bruce Gaughran (1947 to 2019) KDA Past President,  Author of the Living with Kennedy's Diseas Blog and friend to many men with KD. 

    Bruce's celebration will be Sat. 11/16.  A day after the Conference in Orlando. Moer information will be provided at the conference.

    Bruce Alan Gaughran, age 72, passed away at home on Thursday night, October 24, 2019. He was born on February 7, 1947 in Austin, MN; the ninth child of William and Ada Gaughran. He is survived by his dearly loved wife of 37 years, Cindy Gaughran; daughter, Jan Mason; son Tony Gaughran; grandaughter Jessica Calvin; grandson, Jon Mason; and great grandsons, Chase and Wyatt Calvin. Also survived by five siblings, Joyce Obright, Jerry (Jane) Gaughran, Wayne (Terrie) Gaughran, Dick (Jan) Gaughran, and Paula (John) Ross; extended family, Terry Strong, Sondra Gaughran, Debbie and Stan Houston, Linda Stephens, Larry Dyer, Sandi and Ron Bryant, Lisa and Tommy Manning; and many beloved nephews and nieces. Bruce was preceded in death by his parents and four siblings, Kerm (Gayle) Gaughran, Don Gaughran, Nancy Strong, and Gus Gaughran; and brother-in-law Frank Goly. Bruce lived his life feeling grateful, thankful and blessed every day, regardless of life's challenges. He was special to all of his family and friends for his kind heart, captivating storytelling, his love of people and animals and his great sense of humor. He led his life with courage whether through his service in Vietnam or living with Kennedy's Disease. After his successful career in the trucking industry, he dedicated his time to leading the KDA and later pursued his joy of writing with the Chattanooga Writers' Guild and North Georgia Writers Group (which led to the publication of several books). In lieu of flowers a donation can be made to the Kennedy's Disease Association, P. O. Box 1105, Coarsegold, CA 93614 or https://kennedysdisease.org   A Celebration of Bruce is being planned for a later date.


  • SBMA Patients are More Likely to be Affected by Metabolic Disorders, Heart and Liver Disease. To view the study, click here.


  • New kennedy's Disease Research - Muscle and not neuronal biomarkers correlate with severity in spinal and bulbar muscular atrophy. To learn more, click here


  • Efficacy and safety of leuprorelin acetate for subjects with spinal and bulbar muscular atrophy: pooled analyses of two randomized-controlled trials. To learn more, click here.


  • The NIH (National Institutes of Health) is collecting DNA samples for a KD study. They are looking for genetic markers that impact the progression of KD and our quality of life. If you have been diagnosed with Kennedy's Disease, please contact Angela Kokkinis at This email address is being protected from spambots. You need JavaScript enabled to view it. and she will send you a saliva collection kit.


  •  Living with KD Logo medium

    The Living with Kennedy's Disease Blog