Introducing Madeline Kennedy – ALS Advocate

MadelineLast week I had the tremendous  good fortune to meet Madeline Kennedy in a doctors waiting room.  Madeline is a beautiful and remarkable woman, an experienced psychiatric nurse, clinical instructor,  a mother of four a wife  and a PALS (Person with ALS).
Amyotrophic  Lateral Sclerosis (ALS) is  also known as Lou Gehrig’s disease, it is a degenerative illness with no known cause, no cure and no effective treatment.  ALS striks 2 out of every 100,000 people.  At any time, some 30,000 Americans may call themselves PALS.  About 5,600 people are disgnosed each year and as many die, according to the National Institutes of Health. The one thing that is known is that it does cause death and the average patient lives 3-5 years.  “It’s an awful disease that robs people their whole body and all of their dignity” Kennedy said.
When we met in the doctor’s office, Madeline was driving an electric scooter and her legs were in braces.  When I asked her what had happened she told me of her diagnosis.  And for me it hit a cord, my mother, Marilyn McKenney was diagnosed with ALS in 2000 when she was 69 years old.  Our family recalls vividly her horror and fear, disbelief, sadness and finally resignation to her fate.  Madeline was surprised that I knew of the disease, she has found there is a dearth of information about ALS.    Instead of laying down and crying (though she may have done that too for a time) Madeline has become one of the country’s foremost advocates and voices for people with ALS.   She has started an informational website  has done a series of lectures and talks that are posted on UTube and is a featured advocate for NEALS .
Congratulations Madeline, you are truly an inspiration!