Rob Tison, Arden, North Carolina
In his former life as a mechanical engineer, Rob Tison solved problems related to residential construction. However, in March 2010, Tison’s priorities shifted when doctors told him he had ALS. Tison, 41, began to use his scientific background to inform the public about Lou Gehrig’s Disease and work with The ALS Association’s Jim “Catfish” Hunter Chapter and its constituents.
Rob and Kelly Tison
In honor of his endeavors, the chapter is recognizing Tison and his wife and caregiver Kelly during ALS Awareness Month for the annual “ALS Across America” campaign.
“Rob, his wife and children, Tyler and Sydne, have faced one of the toughest challenges— an ALS diagnosis,” said chapter Director of Care Services, Sue Humphries. “In spite of this, they remain determined to participate in life.”
Tison partakes in myriad activities to support the chapter and assist others with Lou Gehrig’s disease. He understands the need for public policy in affecting change. Tison has worked with the National ALS Registry team at the Centers for Disease Control since 2010. The Northeast ALS Consortium (NEALS) has named him a clinical research ambassador. In the latter role, he educates those with ALS about clinical trials and encourages them to enroll in such studies.
“For such a talented, young family man to re-channel his energy and take his focus from an engineering career to ALS public policy is an inspiration to all who know him and those who meet him for the first time,” said Humphries. Humphries also lauds Tison for his selflessness in dealing with the disease. “Rob courageously advocates for those with ALS and those who will be diagnosed with the disease in the future. He has stated openly that he feels he himself may not be the beneficiary of possible new treatments or drugs for Lou Gehrig’s Disease.”
Tison frequently interacts with people battling the disease on several online communities going by the moniker “Persevering.” “Rob has a voracious appetite in learning about ALS research and sharing this information on ALS forums,” Humphries continued. He has discussed his participation in clinical trials on these sites and has presented comprehensive information and data about the disease in both scientific and lay terms. His exchanges with the individuals on these forums denote his resolve to fight ALS.
As they have done since 2010, Tison and Kelly will participate in this year’s National ALS Advocacy Day and Public Policy Conference. The couple and their children will meet with their state’s representatives on Capitol Hill.
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