Dear KD Family, 

In this time of the Coronavirus pandemic, we at the KDA would like to urge extra caution for those with Kennedy’s Disease.  The Coronavirus can cause lower respiratory congestion, which is difficult for some people with KD to deal with, since we have trouble producing productive coughs. If you are someone with respiratory difficulties, or are age 60 or older, we would include you in the higher risk population.

Please adhere to the recommendations by the Center for Disease Control on ways to prevent exposure to the Coronavirus, as this is your best defense. The CDC tells us that: The virus is thought to spread mainly from person-to-person (within about 6 feet) through respiratory droplets produced when an infected person coughs or sneezes. These droplets can land in the mouths or noses of people who are nearby or possibly be inhaled into the lungs.

It is recommended that you avoid close contact with people and large gatherings. Also, wash your hands frequently and avoid touching your face.  To see more in depth information, click on the link to see the information the CDC has provided to help prevent infection

In the interest of learning from your experience, we ask that you or a care provider contact the KDA if you test positive for the Coronavirus. Continue to live your lives, but do so in a way that keeps you and your loved ones at minimal risk. We wish you health and freedom from fear. 

Sincerely, 

The Board of Directors of the KDA


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Kennedy's Disease Association, recently received a quarterly donation of $280.62 thanks to customers shopping at smile.amazon.com.To date, AmazonSmile has donated a total of $4,521.65 to the Kennedy's Disease Association to help us find a cure.. 


  • Identical Twins with KD Study: A case study of two identical twins with KD shows very different onset of the symptoms of Kennedy's Disease. One twin started showing signs at age 31 whereas the other not until he was 56. There were also several other differences in how the KD impacted their lives. To access the case study, click here.


  • Molecular Mechanisms and Therapeutics for KD: In an attempt to develop new therapies for people with KD, a paper by Frederick J. Arnold and Diane E. Merry provides a comprehensive overview of the many ailments that people with KD encounter. To read more, click here


  • Heat Shock Protein as a possible treatment for KD: It is believed that the long CAG repeat length in the androgen receptor is a mechanism that causes the protein to fold incorrectly and thus get trapped in the cell nucleus. The ability of Hsp70 to facilitate degradation of misfolded proteins makes it an attractive therapeutic target in polyQ diseases, of which KD is one. Targeting Hsp70 facilitated protein quality control for treatment of polyglutamine diseases. To learn more, click here.


  • The NIH (National Institutes of Health) is collecting DNA samples for a KD study. They are looking for genetic markers that impact the progression of KD and our quality of life. If you have been diagnosed with Kennedy's Disease, please contact Angela Kokkinis at This email address is being protected from spambots. You need JavaScript enabled to view it. and she will send you a saliva collection kit.


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