Meet Lisa Lopatofsky and family: NFADB Member and newest committee member to the Policy, Information, and Education (PIE) Committee.
Andrew and Lisa Lopatofsky are parents to Michaela, 6, Alexandra, 4, and Aurora, 2. The family lives in Waymart, PA. Michaela and Alexandra both have Usher Syndrome, Type 1b. They wear bilateral cochlear implants, use a combination of English and ASL to communicate, and are learning Braille. Michaela is excited to have attended mainstream Kindergarten this year and Alexandra will begin her third year at the Scranton School for Deaf and Hard of Hearing Children in the fall. The girls are very energetic and love to play with their younger sister and cousins. They enjoy swimming, playing dress up, going on amusement park rides, riding with Daddy in the side by side, helping Papa on the farm, and being outdoors. Michaela is looking forward to going back to Girl Scouts and they both can’t wait to start gymnastics classes in the fall.
Lisa and her family have been members of NFADB for three years. She started researching support organizations when they started the journey with their daughters. She found herself coming back to NFADB as she felt the organization had so much to offer and she had to be a part of it. Lisa also sits on the board of the Pennsylvania State NFADB Affiliate, the Pennsylvania Partnership for Deafblind (PPDB). She has just been nominated to the Vice President position and will now begin her role as a part of the Executive Committee.
Last summer, (2019) Lisa received a scholarship from NFADB to attend a conference about Usher syndrome. She wanted to share the following about the experience:
I was so thrilled to have received the scholarship to attend the Usher Syndrome Conference in Philadelphia, PA this year. It was a great opportunity for us to connect with more of the Deaf-Blind community and learn about lots of wonderful resources available to our children. We met a lot of families with small children like ours and also adults living with Usher. Our community seems to be full of wonderful advocates and it makes me want to advocate even harder for those living with Usher. We also learned a lot about new studies and trials that are going on and ones that are in the works. Between meeting all of these people and receiving a lot of great information, it gives us great comfort in knowing that our girls have amazing supports and resources and, therefore, will be able to lead full and happy lives. Thank you so much to NFADB for giving me this opportunity.
NFADB was looking forward to exhibiting and supporting members to attend the Usher Syndrome Coalition conference in Austin, Texas this July, but as with many other conferences, a face-to-face meeting has been postponed due to Covid-19. We are looking forward to participating in USH2020: Virtual USH Connections Week, July 6-11, 2020, presented by the Usher Syndrome Coalition, and attending their in-person conference in 2021.
For more information visit: https://www.usher-syndrome.org/