The ALS Association

Ice Bucket Challenge Progress

ALS Community Loses Ambassador of Hope and Humor

June 17, 2011

Andrew Fleeson was a gentleman with a broad smile that he shared with everyone he met, and he was quick to point out that he was not an ALS patient; rather he was a person living with ALS.  In fact, he lived 28 years with the disease until he died on June 15.

Fleeson, a former marketing director for a computer systems company in Great Britain, was diagnosed with ALS in 1983.  He served on the Board of the United Kingdom’s Motor Neurone Disease Association for more than a decade and in 2003 joined The ALS Association’s National Board of Trustees.  As a member of The Association’s Board, he offered a global perspective on the disease, encouraged The Association to seek out international research, and reminded fellow Board members that ALS is not just an American disease, it is worldwide.

“Andrew was a very independent person before he had the disease and after,” said ALS Association Board of Trustees Chair Jay Daugherty.  “Because he developed a less aggressive form of ALS, he believed it gave him the chance to teach others about the disease, to personally fight the disease and to be an activist example for those who had the disease.  He gave the Board and whole Association the benefit of his intelligence, wit and wisdom.  He will truly be missed by his family and all who are fighting ALS.”

A graduate of the University of Manchester with a Bachelor of Science degree in chemistry, Fleeson believed everyone can make a difference in the fight against ALS and that a positive attitude can improve the quality of life for people with the disease.  Each day he challenged himself to learn something new.

“I like to remind people that a diagnosis of ALS does not mean a person should stop living,” Fleeson once said, a fan of the late actor David Niven, who died of ALS.  “I know progress in our fight against this cruel disease may seem frustratingly slow, but if we keep the faith and pull together, we will win.”

Fleeson moved to the United States in 2000 and was encouraged by advances in research of therapies that have the potential to dramatically slow or even halt the progress of ALS.  It was his personal belief that research would one day discover predictive technologies that will be able to identify individuals who have a high risk of developing ALS so that they can receive treatments that will prevent the disease from becoming active.

“Andrew had a wonderful sense of humor,” remembered ALS Association President and CEO Jane Gilbert.  “He was known to comment on many occasions that ‘God made a few perfect heads, and he put hair on the rest of them.’  Of course his head was perfectly bald.”

During his tenure on The Association’s Board, Fleeson served on many committees, but he had a special passion for the committee that had oversight of patient care.  “At first I did not think I had too much to offer The ALS Association, especially since I am not an American,” said Fleeson, “but I was so moved by the work they were doing that I accepted their invitation to join the Board.”

“The fact that he had ALS never seemed to be an impediment to his outlook on life or his ability to command the attention and respect of people from all over the world,” continued Gilbert.  He was truly a friend to all and determined to do what he could to find a way to cure ALS.  He will be missed by all who knew him.”

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