Read the press release below from Florida Congressman Aaron Bean’s office.
WASHINGTON—Today, Congressman Aaron Bean (FL-04) introduced a bipartisan resolution supporting the designation of June 9, as “Batten Disease Awareness Day.”
“I am proud to introduce this important resolution to raise awareness about Batten Disease. Families and caregivers impacted by this disease are often fighting a silent battle due to a lack of public awareness,” said Congressman Bean. “Increasing that awareness helps to honor their fight, and strengthen the development of innovative treatment options and research for a cure. I encourage my congressional colleagues to support its passage.”
Batten Disease is a fatal rare genetic disorder of the nervous system that affects 2 to 4 out of every 100,00 children. In the United States, there are 420 known patients currently battling this life-altering disease.
“International Batten Disease Awareness Day is a day we set aside to celebrate our families, raise up the parents and tell their stories to the world. BDSRA Foundation uses this day to demonstrate our continued commitment to advocate for and support the thousands of families who have been impacted by this devastating rare disease,” said Amy Fenton Parker, President & CEO Batten Disease Support, Research, & Advocacy Foundation.
Original cosponsors of the bill include Representatives Nancy Mace (SC-01), John Rutherford (FL-05), Bill Posey (FL-08), Donald Payne (NJ-10), Paul Tonko (NY-20), Don Bacon (NE-02), Barry Moore (AL-02), Jennifer Gonzalez-Colon (R-PR), Mike Rogers (AL-03), and Raul Grijalva (AZ-07).
Read the resolution here.
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