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Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

Our Focus Remains on Research, Education and Support

The Kennedy’s Disease Association 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.


Will my child be born with this DNA defect?

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.


Kennedy’s Disease Knows No Boundaries...

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.


What is Kennedy's Disease?

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.


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share_informationThe Kennedy’s Disease Association (KDA) has developed several programs and resources to support and make information available to individuals and families that are directly affected by this rare neurological disorder.  We invite you to explore the options listed below and also encourage you to refer your physician to this website. 90¢ of every dollar spent goes towards Kennedy’s Disease research (80¢) and education (10¢)*.

  • Website: The KDA’s website is the most comprehensive source of current information available on Kennedy’s Disease, research, clinical trials and related issues.
  • Annual Conferences and Educational Symposiums: The KDA sponsors an annual conference for those living with Kennedy’s Disease as well as for researchers to meet and share their findings.
  • Chat Rooms: The KDA’s chat room is available on the first, second and third Saturday of each month to support those living with Kennedy’s Disease (KD).  Researchers and other professionals are often guests.  These informal chats provide a means to develop friendships, share information, and gain support from others dealing similar day-to-day issues.
  • KDA Forum: The KDA forum provides another opportunity to ask questions, share information, and build relationships.
  • Information Guides: The KDA has developed a series of self-help guides for Kennedy’s Disease patients and their families.  These guides include topics such as applying for Social Security - Disability, exercise programs recommended for those with KD, and financial planning.
  • Newsletters: These include updates on the latest research and clinical trials, personal stories, helpful information and links, as well as association news.  They are delivered to KDA associates periodically throughout the year.
  • Living with Kennedy’s Disease Blog: Articles related to living with Kennedy’s Disease, research, and personal stories are published three times each week in this blog.
  • Facebook: The KDA Facebook provides association and personal news as well as updates and links to information of interest.


* Information provided from 2007-2010 Annual Reports