History of NYPADB

The organization began in 1988 when a group of dedicated parents of deafblind individuals, joined together to share information and support. New York Parent Network, Inc. was registered in New York State as a recognized not-for- profit organization in 1992. NYPN gained IRS 501(c)(3) status in 2009, making contributions tax-deductible. In 2013, we changed our name to New York Parent Association for  Deaf-Blind (NYPADB) to better identify with the population we serve. Our Board consists of parents and professionals. We are family RUN, DRIVEN, and FOCUSED.

 

The New York Parent Association for Deaf-Blind is an affiliate of the National Family Association for Deaf-Blind (NFADB). NYPADB works in partnership with the New York Deaf-Blind Collaborative (NYDBC).

 

Jitka Seck

 

I am originally from Czech Republic, currently living in Westchester NY. I am a mother of 14 year old twins - typically developing son and a DeafBlind daughter with multiple disabilities. I began my journey into the world of deaf-blindness immediately after my kids birth. 

 

I love to learn and advocate for my daughter’s needs. I am passionate about helping families of children with special needs. I also serve as a  Deaf-Blind Parent Advisor with the New York Deaf-Blind Collaborative. I work as a personal assistant & organizer. I volunteer with various animal rescue organizations in my spare time.

Suzanne Chen

 

I am the mother of three children, and my oldest, Parker is deaf-blind and diagnosed with CHARGE Syndrome. I am also the Family Engagement and Outreach Coordinator for the New York Deaf-Blind Collaborative. I have advocated for Parker in many ways: educational, social, medical, and I have been a part of the special needs and medical communities for over 11 years.

 

I am also the NY state liaison for the CHARGE Syndrome Foundation. Suzanne is also on the Family Advisory Council for the Morgan Stanley Children’s Hospital and is an Ambassador Mom with the March of Dimes. She also serves as Co-Vice President on the Board of Trustees for the Lexington School and Center for the Deaf in Queens, NY. I love connecting with other families, and I take pride in the diversity of my advocacy efforts, and the multiple hats that I wear! Parker has shown me the importance of representation, having a voice, and belonging. I believe that fostering those relationships leads to increased sharing of ideas and information. That is the foundation for systems change and positive outcomes!

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Cyndie Pfohler

 

I live in Morrisonville, New York. I have been a board member for many years. NYPADB has been a great resource over the years attending various workshops and family events. It has also helped me to connect with other deaf-blind families.

 

My son Josh is 20 years old, and has CHARGE Syndrome. Josh does not let these things hold him back from living a life filled with activities that make him happy. Some of Josh’s favorite activities are participating in horse therapy, swimming, soaking in the hot tub, car rides, going to the park, and using his iPad.

 

I am also an Independent Self Direction Support Broker through the Office for People with Developmental Disabilities (OPWDD).  I work with individuals with special needs helping them obtain necessary supports and services to live a life that is meaningful and fulfilling.

Kirsten Fleming

 

I live in Queens. I joined as a member of NYPADB in 2018 after attending one of their conferences. I live with my husband Tom and we also have a 15 year old son Liam.  I work full time as a bookkeeper in a CPA firm.  

 

Ingrid, age 6, was born with moderate to severe hearing loss in her right ear and bilateral iris coloboma. At the age of 4 she was diagnosed with moderate  loss in her left ear. She also has developmental delays and ADD. When I can get some free time, I like to take my children to see or experience new things (my daughter and I marched in the NYC St. Patrick’s Parade in 2019). We love to take road trips and my husband Tom makes certain to take Ingrid on long walks through wooded areas of our local parks. 

 

I believe it is important to be a part of a support group, especially one like NYPADB, because it’s a great way to connect and network with other families going through the same situation. Meeting families through some of the educational activities and workshops in NYPADB are not just for the special needs child, but for other siblings as well.  Talking with other parents (who are on similar journeys as I am with Ingrid) helps to  better understand what she is going through. Sometimes, hearing someone else’s perspective or thoughts might lead you on a brighter path.

Audrey Dwyer

 

My family and I live in Suffolk County. I am the wife of a physics teacher/track coach and the mom to 3 adult children. My 28 year old daughter has CHARGE Syndrome, and she is DeafBlind. 

 

I have been part of the NYPADB family for many years, and served on the board as secretary from 2012 to 2020. Through those years I have seen this group evolve and grow. It is run by families, for families. NYPADB offers information and resources for Deafblind parents, and their children of all ages. We advocate for the deafblind community, ensuring fairness and services for our children. But most of all, we are families going through similar experiences, the shared joys, and struggles of raising a child with deafblindness. That is what makes me so proud to be part of NYPADB.

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Clara Berg

 

mother of three adult children. Kenny (middle one) has been working in a farm since 1999 and lives in his own apartment with support since 2011. He is deaf-blind due to prematurity and instrumental in getting his mother involved in the field of deaf-blindness. 

 

Clara retired in 2017 after working for almost three decades as the Family

Specialist for the federally funded New York Deaf-Blind Project. She was involved in the development and first President of the New York Parent Network (today called the New York Parent Association for Deaf-Blind - NYPADB) and was co-founder of the National Family Association for Deaf-Blind (NFADB) and served as their President from 2013 till 2018.

Worked as a consultant for the Hilton Perkins Program since 1992 and travelled to different countries in Central and South America and Poland to identify local parent leaders and develop networks of parents of children who are deaf-blind Participated in different School Board of Directors, lectured in graduate classes for special education teachers in various Universities, was involved in the development of material for intervener training thru NCDB and SPARKLE.

 

A pioneer in providing weekly group support to families who speak Spanish and providing them with translated material to share resources and information.