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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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KDA Services Provided PDF Print E-mail

A.    Research Grants

  • Financially support selected Kennedy's Disease research

B.    Neurologist Mailers

  • Provide Kennedy's Disease education to medical professionals

C.    Research Updates

  • Email updates on current research and published papers

D.    Host Chat Rooms

  • Twice a month open chats often with doctors, researchers, and other professionals

E.    Educational Conferences

  • Bi-annual conferences for Associates and researchers
  • Regional research conferences
  • Regional associate meetings

F.     Kennedy's Disease Web Site

  • One of the most comprehensive information sources for Kennedy's Disease.

G.    Kennedy's Disease Forum

  • On-line information including opportunities to ask questions concerning treatments, support, and other disability topics

H.   Scientific Review Board

  • Research and medical professionals supporting and advising the KDA

I.     Support Groups

  • Provides several levels of support for those affected with Kennedy's Disease, carriers, and family members

J.     Tissue Donation Program

  • Donated tissue is made available for qualified Kennedy's Disease research

K.    Memberships

  • Member of the National Organization of Rare Disorders (NORD) - Supporting and influencing research and education of rare disorders

L.    Networking

  • Develop friendships and relationships with others affected with KD, carriers, and family members

M.   Medical History Form

  • Provide a comprehensive standardized form that can be carried by those affected and given to doctors and hospitals in their living area

N.    Medical Condition Card for Wallet

  • Provide a standardized card to be carried in your wallet that notifies medical personnel of your condition

O.    Associates Database

  • Most comprehensive list of individuals affected with KD

P.    Research Trial Support

  • Support trials by NIH and other research organizations

Q.    Liaison with Research Organizations

  • Support NIH and other research organizations
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