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WHEREAS, Batten disease is an extremely rare, fatal, and inherited disorder of the nervous system that usually begins in childhood; and
WHEREAS, Batten disease is the most common form of a group of disorders called the Neuronal Ceroid Lipofuscinoses; and
WHEREAS, Batten disease was first recognized in 1903 by Dr. Frederick Batten, but the first genes causing Neuronal Ceroid Lipofuscinoses were not identified until 1995; and
WHEREAS, Batten disease causes seizures, cognitive decline, loss of eyesight, speech, and mobility; and
WHEREAS, children diagnosed with this deadly disease often do not live past their teenage years; and
WHEREAS, currently, there is no cure for any form of Batten disease, though a treatment for one of the forms (CLN2 disease) has been approved by the U.S. Food and Drug Administration; and
WHEREAS, the Batten Disease Support and Research Association (BDSRA) is dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action; and
WHEREAS, founded in 1987, by parents seeking to build a network for those diagnosed with Batten disease, BDSRA is now the largest support and research organization dedicated to Batten disease in North America; and
WHEREAS, Batten Disease Awareness Month is an opportunity to spread awareness and understanding, improve medical treatment, and encourage continued research of this disease;
NOW, THEREFORE, I, Ralph S. Northam, do hereby recognize June 2019 as BATTEN DISEASE AWARENESS MONTH in our COMMONWEALTH OF VIRGINIA, and I call this observance to the attention of all our citizens.