Family Spotlight from NFADB - Lopatosky Family
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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.
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.
Danielle Cieply, Board Member
About Me
Hi everyone! My name is Danielle Cieply and I am from the Pittsburgh area. I live in a house of all boys and my only gal pal is my dog, Alice. My husband Zach and I have two boys, Max and Jack. Jack will be 9 at the end of this month and Max will be turning 14 in October. I really enjoy traveling with my family. One of my favorite things to do is to go to amusement parks. My boys think it's hilarious that mom is getting old and can't take being on spinning rides anymore. I am also a huge wrestling fan. I always have fun attending live wrestling events with my family.
When I was pregnant with Max, I found out that he had a congenital heart defect known as Single Left Ventricle. Once Max was born, we received the news that he had Spina Bifida and microtia on his left side. We knew with Max missing his left ear that we were going to have to follow up with audiology, but at this appointment we found out that Max had fluid in his right ear and couldn't hear. Max was fitted with a BAHA and a tube was placed in his right ear. The tube became clogged, and Max's eardrum ruptured, which resulted in a moderate hearing loss in his right ear. He now wears a hearing aid and an Osia Implant, which replaced the BAHA.
Two years ago we went back to genetics to have additional testing done. It was at this time Max was given a diagnosis of Goldenhar Syndrome.
Max has had a lot of medical challenges, but he is one tough guy. He enjoys the arts, and he was in the middle school musical last year. He played the part of Wiesel in last year's production of Newsies. It was a very proud moment for our family.
What brought me to PPDB
I was talking to my fellow Parent Mentor Lisa from Family Connections, and I was telling her about Max's Goldenhar diagnosis. Lisa shared information with me about PPDB and she told me that I really needed to talk with Patti and Molly. Patti and Molly have shared so many great resources with me over the years. Not only have these resources been helpful for Max but I am able to pass this information along to families that I work with.
Photo Description
Photo 1 is a picture of Danielle (middle R), wearing a black shirt, blue jean shorts, sunglasses, and baseball hat and her husband Zach (middle L), wearing a gray shirt and light gray shorts with a baseball hat with their boys Max (L), wearing an orange tie-dye t-shirt, black shorts, sunglasses and a baseball hat and Jack (R) wearing a yellow shirt, blue shorts and white sun glasses, at Dollywood.
Picture 2 is a picture of Danielle (back R), wearing a black t-shirt, her husband Zach (back L), wearing a black t-shirt and glasses, son Max (bottom middle), wearing a tie-dye t-shirt, tie-dye headband, and glasses, son Jack (bottom R), wearing a tie-dye t-shirt, tie-dye headband, and sunglasses, WWE wrestler Mick Foley (bottom L), wearing a colorful Santa Hawaiian shirt.
About Me
Hi everyone! My name is Danielle Cieply and I am from the Pittsburgh area. I live in a house of all boys and my only gal pal is my dog, Alice. My husband Zach and I have two boys, Max and Jack. Jack will be 9 at the end of this month and Max will be turning 14 in October. I really enjoy traveling with my family. One of my favorite things to do is to go to amusement parks. My boys think it's hilarious that mom is getting old and can't take being on spinning rides anymore. I am also a huge wrestling fan. I always have fun attending live wrestling events with my family.
When I was pregnant with Max, I found out that he had a congenital heart defect known as Single Left Ventricle. Once Max was born, we received the news that he had Spina Bifida and microtia on his left side. We knew with Max missing his left ear that we were going to have to follow up with audiology, but at this appointment we found out that Max had fluid in his right ear and couldn't hear. Max was fitted with a BAHA and a tube was placed in his right ear. The tube became clogged, and Max's eardrum ruptured, which resulted in a moderate hearing loss in his right ear. He now wears a hearing aid and an Osia Implant, which replaced the BAHA.
Two years ago we went back to genetics to have additional testing done. It was at this time Max was given a diagnosis of Goldenhar Syndrome.
Max has had a lot of medical challenges, but he is one tough guy. He enjoys the arts, and he was in the middle school musical last year. He played the part of Wiesel in last year's production of Newsies. It was a very proud moment for our family.
What brought me to PPDB
I was talking to my fellow Parent Mentor Lisa from Family Connections, and I was telling her about Max's Goldenhar diagnosis. Lisa shared information with me about PPDB and she told me that I really needed to talk with Patti and Molly. Patti and Molly have shared so many great resources with me over the years. Not only have these resources been helpful for Max but I am able to pass this information along to families that I work with.
Photo Description
Photo 1 is a picture of Danielle (middle R), wearing a black shirt, blue jean shorts, sunglasses, and baseball hat and her husband Zach (middle L), wearing a gray shirt and light gray shorts with a baseball hat with their boys Max (L), wearing an orange tie-dye t-shirt, black shorts, sunglasses and a baseball hat and Jack (R) wearing a yellow shirt, blue shorts and white sun glasses, at Dollywood.
Picture 2 is a picture of Danielle (back R), wearing a black t-shirt, her husband Zach (back L), wearing a black t-shirt and glasses, son Max (bottom middle), wearing a tie-dye t-shirt, tie-dye headband, and glasses, son Jack (bottom R), wearing a tie-dye t-shirt, tie-dye headband, and sunglasses, WWE wrestler Mick Foley (bottom L), wearing a colorful Santa Hawaiian shirt.
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Jessica Coffin, Board Member
About Me
Hello! My name is Jessica Coffin from Collegeville, PA (a suburb of Philadelphia). I live with my husband, David, our almost six-year-old son, Noah, and our dog, Coco. Noah has Usher Syndrome Type 1b, which is the cause of his DeafBlindness, as well as Autism Spectrum Disorder. Although Noah received Cochlear Implants when he was eight months old, he had a bilateral device failure at age 3, and since then has refused to wear his CIs. We are therefore learning American Sign Language as a family, and Noah is a student at the PA School for the Deaf where he will start kindergarten in the Fall. In my spare time, I enjoy reading fiction books, and spending time with my family. Noah is a thrill seeker so we like to travel to different amusement parks so he can test out every roller coaster he’s tall enough to ride.
Why I Joined PPDB
I joined the Board after initially connecting with PA Deaf-Blind Project following our family’s move to PA from Washington, DC. We were unhappy with the services Noah was receiving in his educational placement and felt very strongly that Noah needed to be placed in an immersive sign language environment. Although I am a lawyer, and therefore advocate on others’ behalf for a living, it’s a very different experience when you’re advocating for your own child, particularly when you’re navigating difficult and emotional situations. The educational and family consultants helped us through the process, and we were successful in getting Noah placed at the school we felt was the best fit for him. I have learned a lot more about the special education process since then, and joined the PPDB Board so I can hopefully help to advocate for others who need it. Additionally, parenting a child with such a low incidence disability can be very isolating, so I appreciate being a part of the Board which has allowed me to meet so many other families who “get it.”
Photo Description
• Photo 1 is a picture of Noah (R), a young boy wearing a tie dye shirt and camouflage pants, and Coco (L), a large Bernedoodle dog who is black, white and brown in color. Noah and Coco are sitting together in a fort that is part of Noah’s swing set.
• Photo 2 is a picture of David (L), wearing a black shirt and sunglasses, Noah (middle), wearing a life jacket, and Jess (R), wearing a striped shirt and sunglasses. David, Jess and Noah are smiling at the camera while riding on a friend’s boat.
About Me
Hello! My name is Jessica Coffin from Collegeville, PA (a suburb of Philadelphia). I live with my husband, David, our almost six-year-old son, Noah, and our dog, Coco. Noah has Usher Syndrome Type 1b, which is the cause of his DeafBlindness, as well as Autism Spectrum Disorder. Although Noah received Cochlear Implants when he was eight months old, he had a bilateral device failure at age 3, and since then has refused to wear his CIs. We are therefore learning American Sign Language as a family, and Noah is a student at the PA School for the Deaf where he will start kindergarten in the Fall. In my spare time, I enjoy reading fiction books, and spending time with my family. Noah is a thrill seeker so we like to travel to different amusement parks so he can test out every roller coaster he’s tall enough to ride.
Why I Joined PPDB
I joined the Board after initially connecting with PA Deaf-Blind Project following our family’s move to PA from Washington, DC. We were unhappy with the services Noah was receiving in his educational placement and felt very strongly that Noah needed to be placed in an immersive sign language environment. Although I am a lawyer, and therefore advocate on others’ behalf for a living, it’s a very different experience when you’re advocating for your own child, particularly when you’re navigating difficult and emotional situations. The educational and family consultants helped us through the process, and we were successful in getting Noah placed at the school we felt was the best fit for him. I have learned a lot more about the special education process since then, and joined the PPDB Board so I can hopefully help to advocate for others who need it. Additionally, parenting a child with such a low incidence disability can be very isolating, so I appreciate being a part of the Board which has allowed me to meet so many other families who “get it.”
Photo Description
• Photo 1 is a picture of Noah (R), a young boy wearing a tie dye shirt and camouflage pants, and Coco (L), a large Bernedoodle dog who is black, white and brown in color. Noah and Coco are sitting together in a fort that is part of Noah’s swing set.
• Photo 2 is a picture of David (L), wearing a black shirt and sunglasses, Noah (middle), wearing a life jacket, and Jess (R), wearing a striped shirt and sunglasses. David, Jess and Noah are smiling at the camera while riding on a friend’s boat.
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Johnine Bickauskas, Board Member
Hi! My name is Johnine Bickauskas from Jefferson Township Pa ( 20 miles north of Scranton Pa ) My husband Darryl and I have 2 adopted children Kayla who is 18 a student at Bloomsburg University, majoring in Special education, Deaf Education minoring in ASL Kase who is 8 years old a student at Scranton School for Deaf and Hard of Hearing Children. Kase has Polymircogyria bilateral frontal lobes which is his cause of deaf blindness.
I joined the board of PPDB to serve as an advocate for Kase and others. The following is an inspirational quote that reminds me we can all be helpers:
“If you could only sense how important you are to the lives of those you meet; how important you can be to the people you may never even dream of. There is something of yourself that you leave at every meeting with another person.” - Fred Rogers
Description of picture below: Kayla, Johnine, and Kase wearing sunglasses, seated outdoors surrounded by flowers, smiling in the photo. Case wears a "Mama's Boy" t-shirt.
Hi! My name is Johnine Bickauskas from Jefferson Township Pa ( 20 miles north of Scranton Pa ) My husband Darryl and I have 2 adopted children Kayla who is 18 a student at Bloomsburg University, majoring in Special education, Deaf Education minoring in ASL Kase who is 8 years old a student at Scranton School for Deaf and Hard of Hearing Children. Kase has Polymircogyria bilateral frontal lobes which is his cause of deaf blindness.
I joined the board of PPDB to serve as an advocate for Kase and others. The following is an inspirational quote that reminds me we can all be helpers:
“If you could only sense how important you are to the lives of those you meet; how important you can be to the people you may never even dream of. There is something of yourself that you leave at every meeting with another person.” - Fred Rogers
Description of picture below: Kayla, Johnine, and Kase wearing sunglasses, seated outdoors surrounded by flowers, smiling in the photo. Case wears a "Mama's Boy" t-shirt.
