Proposal to create SMARD Awareness Day passes both the House and Senate
State Representative Dave Yaccarino’s and State Senate Minority Leader Len Fasano’s proposal to recognize and bring awareness to spinal muscular atrophy with respiratory distress or SMARD passed both the House and Senate on Wednesday.
(l to r): State Representative Dave Yaccarino, Senate President Martin M. Looney, Senate Minority Leader Len Fasano, Sharon Agli-Pageau, Hunter Pageau and Lt. Governor Nancy Wyman on Wednesday, May 27, laud the passage of a proposal to recognize and bring awareness to spinal muscular atrophy with respiratory distress or SMARD.
The proposal, which Yaccarino and Fasano cosponsored, House Bill No. 6100, would designate every 10th of February as SMARD Awareness Day.
The legislation, introduced in January and followed by an outpouring of support during a February public hearing, now heads to the governor’s desk to be signed into law.
“This proposal is a critical first step in beginning to spread awareness for SMARD, said Rep. Yaccarino (R- North Haven). “By raising awareness for SMARD, we can increase research efforts for a cure.”
“Hunter is truly an inspiration to us all,” said Sen. Fasano (R-North Haven). “By increasing awareness, Connecticut is taking a major first step to help families impacted by SMARD find new support. There is very little awareness about this disease currently, leaving many families in the dark. SMARD awareness day is really about finding and embracing hope and increasing supports for all families affected by the disease today, as well as for those who will be impacted in the future.”
“I want to thank Hunter for his courage and advocacy on behalf of people challenged with Spinal Muscular Atrophy with Respiratory Distress,” said Senate President Martin M. Looney (D-New Haven) whose district includes a portion of North Haven. “His efforts to educate and raise awareness will have a lasting impact in contributing toward effective treatments of this serious condition.”
“I am proud to have met Hunter Pageau; his determination is inspiring,” said Rep. Yaccarino. “Like most people, I had never heard of SMARD before meeting Hunter. Thanks to Hunter’s dedication I am extremely proud to support this bill and call Hunter and his family my friends – this is a very proud day.”
To help Hunter, friends of the Pageau family have set up a fundraising website at: http://www.youcaring.com/medical-fundraiser/help-hunter-pageau-outsmart-smard-a-cure-now-within-reach-/314436.
To follow Hunter’s story, visit his Facebook community page: https://www.facebook.com/HOPEforHunterPageau.