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07/28/2015 01:30 PM

North Haven Boy Inspires Legislation on Rare Disease Awareness


From left, State Senator Len Fasano, Sharon Agli Pageau, State Representative David Yaccarino, and North Haven First Selectman Mike Freda congratulate Hunter Pageau on the state designation of Feb. 10 as SMARD Awareness Day.

State Senate Minority Leader Len Fasano and State Representative Dave Yaccarino’s proposal to recognize and bring awareness to spinal muscular atrophy with respiratory distress (SMARD) was signed into law at a ceremony held by Governor Dannel P. Malloy on July 22. The proposal, which Yaccarino and Fasano cosponsored, House Bill No. 6100, designates every Feb. 10 as SMARD Awareness Day. The legislation was inspired by Hunter Pageau, a North Haven boy entering 5th grade this fall. Pageau has SMARD, an extremely rare life-threatening motor neuron disorder. Only 10 people in the United States have this disease, and only 80 worldwide. For the past decade, Pageau and his family have advocated for more awareness and research to help those who have SMARD and their families. This legislation is a major first step to help families impacted by SMARD find new support.

To help Pageau, friends of the family have set up a fundraising website at: www.youcaring.com and www.gofundme.com/SaveHuntersWheels. To follow Pageau’s story, visit his Facebook community page: www.facebook.com/HOPEforHunterPageau.