From left: Lisa Assaly (troop leader), Governor Ralph Northam, First Lady Pam Northam, Siena Assaly, Maria Borst, Peggy Borst (troop leader). Front, Victoria Delacourt.
Photo courtesy of Jack Mayer/Office of the Governor
Vienna Girl Scout Troop 1673 met with Governor Ralph Northam and First Lady Pam Northam to receive a proclamation in recognition of Usher Syndrome Awareness Day on Sept. 21, 2019 in the state of Virginia. Usher syndrome, a genetic disorder, is a leading cause of combined deafness and blindness. The Junior Girl Scout Troop, Siena Assaly, Maria Borst and Victoria Delacourt accompanied by troop leaders Lisa Assaly and Peggy Borst informed the Governor and the First Lady of their various efforts to raise awareness to include an awareness event with sensory loss simulations.
The girls also held a social media dance challenge and hosted an upcycled art show where the proceeds were donated to further research of Usher syndrome. The troop will continue raising awareness this year by traveling to New York City to host an Usher syndrome awareness event for New York City Girl Scouts.
The troop chose this cause to support their troop member, Maria Borst, whose mother, Peggy, has Usher syndrome. Peggy Borst, is a board member of the Usher Syndrome Society, a non-profit that uses the arts, educational events, and collaboration to raise public awareness and funds for treatments and a cure for Usher syndrome. Usher Syndrome Awareness Day (#USHday) was started by the Usher Syndrome Coalition, a patient advocacy nonprofit, five years ago to raise global awareness of Usher syndrome. This day coincides with the equinox, when the days become shorter, symbolizing the progressive loss of vision and hearing of those living with Usher syndrome. The goal is to have each state recognize Usher Syndrome Awareness Day in a collaborative effort to raise awareness and funds. If you are interested in learning more, go to Ushersyndromesociety.org.