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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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Every few days a baby is born with this DNA defect

 

Kennedy’s Disease is a rare disorder.  It is estimated that only 1-in-40,000 have this genetic defect.  Because of this, Kennedy’s Disease is often initially misdiagnosed or goes undiagnosed for years.  The Kennedy’s Disease Association (KDA) works to increase awareness in the medical community as well as improve public aware of this disease.

The KDA helps increase awareness in the following ways.

  • Mailers:  The KDA has mailed Kennedy’s Disease brochures to over 12,000 neurologists.  These brochures provide a list of symptoms, the most common misdiagnosis, testing available, and where to find additional information on the disease.
  • Brochures: The KDA makes available Kennedy’s Disease brochures designed for doctors and the public.  These brochures are available for download from our website or can be ordered directly from the KDA.
  • Website: The KDA’s website is an excellent resource for information on the disease.  It also provides a “locator service” that lists doctors by state/province and country that are familiar with Kennedy’s Disease.
  • 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.
  • KDA Forum: The KDA forum provides those looking for answers with an opportunity to ask questions and share information.
  • NORD Membership: The KDA is an active member of NORD (National Organization for Rare Disorders).  This organization raises the awareness of rare disorders at the federal government level and with the public.
  • Living with Kennedy’s Disease Blog: Three times a week articles related to living with Kennedy’s Disease, research, and personal stories are published in this blog.
  • Facebook: The KDA Facebook provides information of interest and links to information on the disease.

Individuals can also help increase awareness by:

  • Fundraising Campaigns: By participating in marathons, walk-run events, and bike races.
  • Organizational Awareness Campaigns: By handing out brochures and placing informational ads at medical conferences or company events.
  • Personal Stories: Having their stories published in local newspapers.

 

KDAlogo

P.O. Box 1105
Coarsegold, CA 93614-1105

(559) 658-5950

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Today: Jul 25, 2014