We are truly saddened to report the death of one of our founding members, Terry Waite. Terry made this world a better place, by bringing us all together to help find a cure for Kennedy's Disease. We send our love and prayers to all of Terry's family and friends. His wife, Susanne, appreciates the outpouring of support and requests in lieu of flowers to please send a tax deductible donation in memory of Terry Waite to:
The Kennedy's Disease Association
PO Box 1105
Coarsegold, CA 93614
2015 KDA Conference Attendees
View our 2015 KDA Christmas Newsletter with Conference Summary & Research Updates. Click here.
You are not alone because we are all family
The KDA's mission is to inform, support, educate,
fund research, and find a cure for Kennedy's Disease
Together we will make a difference
Spinal Bulbar Muscular Atrophy
Current Kennedy's Disease Research
Excercises that can improve swallowing in KD patients.
December 2015 - The KD group in Japan just published a study on exercises that they found can improve swallowing in KD patients. The paper can be found here. These exercises are quite straightforward and can be done anywhere one can lie down. A pdf of the exercises can be found here. The exercises are done 3 times a day, every day.
Exercise Study Results
July 2015 - The exercise trial paper "A Randomized Controlled Trial of Exercise in Spinal Bulbar Muscular Atrophy" was published on behalf of the American Neurological Association. The abstract with the results are shown below. You can read or down load the entire article by clicking here.
Kennedy's Disease - Interview with Dr. Kenneth Fischbeck
Kennedy's disease is an x-linked motor neuron disease that affects males. Onset of the disease often begins in men aged 20-40 but it has been reported in younger and older males as well. Early symptoms include tremor of the outstretched hands, muscle cramps with exertion, and fasciculations (fleeting muscle twitches visible under the skin). Eventually, individuals develop limb weakness, often beginning in the pelvic or shoulder regions.
, X-linked Spinal Bulbar Muscular
Atrophy, SBMA, neuromuscular disease, support group