The ALS Association

The ALS Community Mourns the Passing of Rob Tison

September 11, 2012
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Rob and Kelly Tison

A loving husband and father, a mechanical engineer who spent his career solving problems, and dedicated advocate in the fight against ALS, Rob Tison continued to live with a strong sense of purpose even after he was diagnosed with ALS in March 2010.  He used his professional skills, knowledge and incredible passion to make a difference in the fight against ALS and in the lives of so many who have been touched by this disease.

An ardent advocate, Tison reached out to Congress and encouraged others to do the same.  This past May in Washington, D.C., he was presented with the Rasmussen Advocate of the Year Award, which is named in honor of Dean Rasmussen, a former ALS Association National Trustee who helped to build what is now The Association’s Public Policy Department.

Working with the National ALS Registry team at the Centers for Disease Control and Prevention, he not only provided them with the perspective of a person with ALS as they continued to build the registry, but also helped spread the word and encouraged others to enroll.  Because of his ability to persuade others to join him, the Northeast ALS Consortium (NEALS) named Tison as a clinical research ambassador, a role that enabled him to educate those with ALS about clinical trials and to help drive enrollment.

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Tison Family at 2012 Advocacy Day

“He was smart, level headed and one of the nicest people I have ever met,” said Jerry Dawson, President and CEO of The ALS Association Jim “Catfish” Hunter Chapter.  “Rob worked so hard to advance the ALS Registry Act, and he never shied away from telling his story.  Although his time with us was cut short, he made the most of the time that he had.  He loved his family very much, and he fought ALS with everything that he had and then some.  His was a life well lived.”

Always trying to be an optimist, he once said on a blog posting that “he realized the cloud of ALS has a silver lining.”  In his pre-ALS days, he was a workaholic.  Being forced to quit his career due to disability allowed him to slow down and realize what is truly important: his family.

“Rob was a uniquely gifted person, who worked diligently to tell the ALS story on the internet and on the Hill,” said ALS Association President and CEO Jane Gilbert.  “Even as he faced the hardship of this devastating disease, he continued to advocate on behalf of all people living with Lou Gehrig’s Disease.  His strength and courage is an inspiration to us all."

Rob Tison is survived by his wife, Kelly, and their two children, Tyler and Sydne.

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