Left to right: Sen. Fasano, Sharon Agli Pageau (Hunter’s mother), Rep. Yaccarino, First Selectman Mike Freda; Front row Hunter Pageau
Senate Minority Leader Len Fasano and 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 Wednesday afternoon. The proposal, which Yaccarino and Fasano cosponsored, House Bill No. 6100, designates every 10th of February as SMARD Awareness Day. The legislation was inspired by Hunter Pageau, a North Haven boy entering 5th grade this fall. Hunter 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, Hunter 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 Hunter, friends of the Pageau family have set up a fundraising website. To follow Hunter’s story, visit his Facebook community page.