2017 Batten Disease Awareness Month

6/1/2017

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. Frederik Batten, but the first genes causing Neuronal Ceroid Lipofuscinoses were not identified until 1995; and

WHEREAS, Batten disease symptoms include loss of eye sight, 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; 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, BDSRA works to build a network of support for the parents of children who suffer from Batten disease, and

WHEREAS, BDSRA is now the largest research and support 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, Terence R. McAuliffe, do hereby recognize June 2017 as BATTEN DISEASE AWARENESS MONTH in our COMMONWEALTH OF VIRGINIA, and I call this observance to the attention of all our citizens.

Archive

2017