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Rep. McCarty Applauds Bill to Name May 13 as Xeroderma Pigmentosum Awareness Day
Posted on June 7, 2021
Telling the legislature that passage of the bill would make the entire session a success, State Representative Kathleen McCarty (R-38) today thanked her colleagues for unanimously supporting a bill to raise awareness of a rare genetic disorder and designating May 13th as Xeroderma Pigmentosum Awareness Day in Connecticut.
Xeroderma Pigmentosum is a rare, inherited genetic disorder characterized by an extreme sensitivity to ultraviolet rays. Rep. McCarty was first made aware of the disease by friend and constituent, Fatima Perez, who suffers from the disorder and runs a support group and informational website from her Waterford home.
“Designating May 13th as XP Day in Connecticut is more than a symbolic gesture and will truly make a difference in the lives of those affected by this terrible disease, including my friend Fatima,” Rep. McCarty said. “Bringing awareness to this disease on the state level will increase outreach and advocacy and provide important information to those who are suffering, their families and caregivers. I cannot thank the Committee leadership enough for championing this issue and seeing it across the finish line.”
The bill also included extending Advance Directive Awareness Day from a single day to the full week of April 16th each year. Advance directives are important legal documents that assist families, loved ones, healthcare workers and other caregivers to understand and implement the wishes of a patient who may not be able to communicate due to illness or if they are near their end of life.
“Advanced directives are important documents that many families unfortunately don’t know they should have, and I am pleased that the message will now be going out to a much wider audience with a full week dedicated to awareness,” Rep. McCarty said. “Having these documents prepared in advance will save family members a great deal of anguish if a family member or someone they know is having end of life issues about healthcare.”
The bill has been placed to the Senate calendar and awaits action. The legislative session end at midnight on Wednesday, June 9th.