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


What is new

Deterioration of muscle force and contractile characteristics are early pathological events in spinal and bulbar muscular atrophy mice

To fully characterise the role of muscle in SBMA, we undertook a longitudinal physiological and histological characterisation of disease progression in the AR100 mouse model of SBMA. Our results show that the disease first manifests in skeletal muscle, prior to any motor neuron degeneration, which only occurs in late stage disease. These findings reveal alterations in muscle function, including reduced muscle force and changes in contractile characteristics, are early pathological events in SBMA mice and suggest that muscle-targeted therapeutics may be effective in SBMA. To read the article. Click here.


Unveiling synapse pathology in spinal bulbar muscular atrophy by genome-wide transcriptome analysis of purified motor neurons derived from disease specific iPSCs

Although ligand (testosterone)-dependent mutant AR aggregation has been shown to play important roles in motor neuronal degeneration by the analyses of transgenic mice models and in vitro cell culture models, the underlying disease mechanisms remain to be fully elucidated because of the discrepancy between model mice and SBMA patients. ...we established disease specific iPSCs from four SBMA patients, and differentiated them into spinal motor neurons. The results revealed the involvement of the pathology associated with synapses, epigenetics, and endoplasmic reticulum (ER) in SBMA. To read the article. Click here.

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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.