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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.

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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.

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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.

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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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You are not alone in your quest for a treatment and cure!

support-system

Because Kennedy’s Disease (KD) is a rare disorder, information and specific KD resources are not readily available through local or regional organizations. The Kennedy’s Disease Association (KDA) provides a support system expressly designed for those living with Kennedy’s Disease, including caregivers, spouses, significant others and families.

The KDA support system includes the following:

  • Website: The KDA’s website provides a list of contacts who have volunteered to help others living with Kennedy’s Disease.
  • Annual Conferences and Educational Symposiums: The KDA sponsors an annual conference for Kennedy’s Disease patients and their families and friends. The conference is an excellent way to make new friends, discuss issues and concerns, as well as learn about the latest research and programs available for the disabled.
  • 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 with the same or similar day-to-day issues.
  • KDA Forum: The KDA forum provides an opportunity to ask questions, share information, and build relationships
  • Locator Service: The KDA will act as an intermediary to help a person living in a particular area to make contact with others who are affected by KD and to locate doctors within their area that are familiar with Kennedy’s Disease.
  • 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.
  • KDA on Facebook: The KDA on Facebook provides association and personal news as well as updates and links to information of interest.