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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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Schedule of Upcoming Chats PDF Print E-mail

A. The Regular Hosted Public KDA chats are held on the 1st and 3rd Saturday's of each month at 10:30 a.m. Eastern (USA) Time. The chats normally last one hour.

B. Wives & Significant Others KDA chats are held on the 2nd Saturday of each month at 11:00 a.m. Eastern (USA) Time. The chats normally last one hour.

These chats are scheduled for the wives, carriers, caretakers and significant others of KD individuals to discuss anonymously everyday issues that they face supporting someone living with Kennedy's Disease or being a carrier.  Note: These chats transcripts are not posted to the KDA site.

C. Three Unhosted Public KDA Chats are held on the 3rd Saturday of each month.  The chats normally last one hour.

 

1)  Europe:  10:00 a.m. GMT (London).
2)  North and South America:  10:30 a.m. Eastern Time (New York).
3)  Pacific Rim:  10:00 a.m. Central Time (Darwin, Australia)

The chat room is open to anyone who wishes to discuss what it is like living Kennedy's Disease.

Note:  If you need help converting the start time to your time zone click on this link: World Time Server.

2013 Chat Room Schedule

 

Chat Date Host Guest Topic




January 05
Lou Tudor
Open Forum
January 12

No Host


For Wives, Carriers and Care Givers
January 19

No Host


Open Forum - International
February 2
Terry Waite

Open Forum
February 9

No Host


For Wives, Carriers and Care Givers
February 16

No Host


Open Forum - International
March 2 Ed Meyertholen

Open Forum
March 9

No Host


For Wives, Carriers and Care Givers
March 16

No Host


Open Forum - International
April 6 Bruce Gaughran
Open Forum
April 13

No Host


For Wives, Carriers and Care Givers
April 20

No Host


Open Forum - International
May 4 Jameson Parker Diane Merry TBD
May 11

No Host


For Wives, Carriers and Care Givers
May 18

No Host


Open Forum - International
June 1 Mike Goynes
Chris Grunseich NIH Exercise Trial

June 08

No Host


For Wives, Carriers and Care Givers
June 15

No Host


Open Forum - International
July 6 Ed Meyertholen

Open Forum
July 13

No Host


For Wives, Carriers and Care Givers
July 20

No Host


Open Forum - International
August 3
Terry Waite

Open Forum
August 10

No Host


For Wives, Carriers and Care Givers
August 17

No Host


Open Forum - International
September 3,

Jameson Parker


Open Forum
September 10

No Host


For Wives, Carriers and Care Givers
September 17

No Host


Open Forum - International
October 5

Bruce Gaughran


Open Forum
October 12

No Host


For Wives, Carriers and Care Givers
October 19

No Host


Open Forum - International
November 2

Jameson Parker


Open Forum
November 09

No Host


For Wives, Carriers and Care Givers
November 16

No Host


Open Forum - International
December 7

Mike Goynes


IGF-1 - Possible Treatment?
December 14

No Host


For Wives, Carriers and Care Givers
December 21

No Host


Open Forum - International