WHEREAS, Batten disease is an inherited disorder that results when both parents carry the defective gene; and

WHEREAS, the siblings of children with Batten disease have a one in four chance of also being affected by the disease, a 50 percent chance of being a carrier, and a 25 percent chance of not carrying the defective gene; and

WHEREAS, approximately 14,000 people around the world live with one of the 13 known forms of Batten disease; and

WHEREAS, symptoms of this fatal disease typically include vision loss leading to blindness, the inability to walk, talk, or swallow, often requiring surgical insertion of a tube for nourishment, personality and behavioral changes, frequent seizures, intellectual decline, disruption and loss of speech, dementia, and other debilitating ailments; and

WHEREAS, Batten disease affects all populations equally, regardless of race, ethnicity, or gender; and

WHEREAS, the disorder currently has few treatment options available, and clinical trials and research endeavors have been significantly delayed or stopped altogether due to the current landscape of the biotech industry; and

WHEREAS, Batten Disease Support, Research, & Advocacy Foundation (BDSRA) leads the collective effort, along with many Batten family foundations, to promote and financially sponsor world-class medical research aimed at finding effective treatments with the goal of finding a cure; and

WHEREAS, BDSRA provides a wide variety of patient, sibling, family, and caregiver support through its information resources, Annual Family Conference, as well as various virtual activities and program offerings; and

WHEREAS, much remains to be done in raising public awareness of Batten disease to help promote early diagnosis, carrier testing, proper management and treatment, and support for research;

NOW, THEREFORE, I, Glenn Youngkin, do hereby recognize June 9, 2024, as BATTEN DISEASE AWARENESS DAY in the COMMONWEALTH OF VIRGINIA, and I call this observance to the attention of all our citizens.