NFADB Board of Directors

 

Patti McGowan

President
Adult Life Committee Chair

I live in the state of Pennsylvania with my husband, and we have three adult children.  I joined NFADB as a member in the early 2000s when our youngest son was first diagnosed as deaf-blind and became a board member in 2009. I work as one of the two-family engagement consultants with the Pennsylvania Deaf-Blind Project. I have had the following opportunities to work as a consultant with National Center on Deaf-Blindness (NCDB) in the development of content for a national website on advocacy and leadership for families, be a regular contributor to the Paths to Transition site through Perkins School for the Blind and took part in the writing team for NCDB Open Hands, Open Access: Deaf-Blind Intervener Modules.  I enjoy supporting families in all aspects of advocacy and leadership.  

Donia Shirley

Vice President

Outreach Committee Co-Chair


live in Miami, Florida and I am the Mom to two beautiful boys. My youngest son was born with DeafBlindness and CHARGE Syndrome. I have joined the NFADB board to give back to this amazing community that has empowered me to become a passionate advocate for not only my son but the DeafBlind Community as a whole. In addition to being a part of the NFADB Board I am the CHARGE Syndrome Foundation Co-State Liaison for the State of Florida and a F2FC Family Call Facilitator. I am also a founding member of the family run organization, Family Partners for the DeafBlind of Florida and the Virgin Islands, we are a NFADB Affiliate that provides support to families who have a child or loved one with DeafBlindness. 


BRANDI HITZELBERGER

Treasurer

Founding Board Member of Twisted Pink.  Previously served as a board member for Visually Impaired Preschool Services.  Kentucky School for the Blind Advisory Board, serving as Chair of the Board for 3 years and Secretary for 3 years. Served on the Kentucky School for the Blind Parent Student Organization as Vice-President.  Served on the Kentucky State Advisory Council for Exceptional Needs, Treasurer for the National Family Association of DeafBlind and Board Member, also serves as their Kentucky Ambassador.  Family to Family connect group Leader, support group leader for families that are Deafblind.  Member of the Kentucky Fillies a Women's group that helps provide funding for the Kentucky Derby Foundation and Princess scholarship program.

KATRINA MICHEL

Secretary

Hi my name is Katrina Michel, I am blessed to be the mother and full time caregiver to my incredible 5 year old daughter with CHARGE Syndrome. I thoroughly enjoy engaging in a variety of related organizations including the Deaf-Blind Collaborative of Florida & US Virgin Islands Advisory Board as a parent representative. a co-facilitator within the Family to Family Community Project (connecting families of individuals with DeafBlindness), the CHARGE Syndrome Foundation as a state parent liaison of Florida, as well as a part of their Family Assistance Program workgroup, and lastly, as a founding member of an affiliate organization of the NFADB named, Family Partners for the DeafBlind of Florida & US Virgin Island. It is paramount to keep in mind that every individual has a voice and that their voice not only matters, but is necessary for change where there is a need. I am thrilled to join the board this year, to grow in advocacy for the DeafBlind community alongside their families, where it 

 

Edgenie Bellah

Board Member
Affiliate Committee Co-Chair

I have the honor of serving on the NFADB board as a professional member. Texas is my home and with my husband, we have three sons and a daughter-in-law who share our passions for fun, food, and service. I am part of the Texas Deafblind Project team, serving as the Family Engagement Coordinator since 2002. I also contract as a certified Orientation & Mobility Specialist working with adults with complex disabilities to help them live how they define their good life. My professional training and experience runs the lifespan; from early childhood to senior citizens, public school and university services to vocational services. Through it all, my best teachers have been my family and friends who share the journey of living life with a disability. They keep me passionate about community and following family leaders in system change efforts.

 

Myrna Medina

Board Member
Affiliate Committee Co-Chair

I am native of Mexico, and live in California, where I got married and had two children.  My youngest child was born with Deaf-Blindness and was the reason I entered this field.  In 2000, I joined California DeafBlind Services as the Family Engagement Specialist.  This position which gives me the opportunity to work directly with families, and also ensures that linguistic and cultural sensitivity is offered to our Spanish speaking community.  I am involved in several parent groups through southern California including the Birth to Five Vision Network Advisory Group for Dicapta Accessible Communication Developers.

 

Melanie Knapp

Board Member
Policy, Information, and Education Committee Co-Chair

I live in Texas with my husband, Gary. We had two sons. Christian was a preemie who, as a result of many complications, was diagnosed with Deaf-Blindness. He was known as "The Great Motivator" to all who knew him.  Christian died suddenly in 2005 at the age of 25. We have continued our involvement and advocacy for all children and adults who are Deaf-Blind in Texas and the US.  I was on the Board of DBMAT - The Deaf-Blind Multihandicapped Association of Texas - for 14 years, the last 4 years as President. I am honored to continue my journey with the NFADB.

Jacqueline Izaguirre

Board Member
Policy, Information, and Education Committee Co-Chair

My husband and I live in Texas and have three adult children. Our middle child is Deaf-Blind due to a Ciliopathy. In addition to NFADB, I am a founding board member and President of DeafBlind Camp of Texas.  I work as my daughter's Intervener and love to spend time with my grand babies!


Nilam agrawal

Board Member
Outreach Committee Co-Chair

It’s my honor to join the NFADB board, and work for the DeafBlind community. I have an MBA in finance and marketing, and have worked in the field of business development, client management and recruitment. I have been associated with nonprofit organizations since 2008 and have served as the co-leader for the Tar-Heel chapter of UMDF. I bring in my experience in the field of children and parent advocacy, fundraising, social media networking, family engagement events, and community outreach programs. I live in Texas with my husband and our two amazing and kind kids, who are diagnosed with Deaf-Blindness. I draw my passion and strength from my children, and I am determined to be a change agent to drive awareness to the unique challenges of DeafBlind community, and improve opportunities for them. 

 

rebecca cowan-story

Board Member

I reside in the tiny metropolis of Adairsville, Georgia with my three children and two felines.  My professional journey has afforded me the opportunity to work as an American Sign Language Interpreter, a high school vocational instructor at a residential school for the Deaf , a Vocational Rehabilitation Counselor for the Deaf, and a coordinator for DeafBlind services, and I still do not know what I want to be when I grow up! You may find me on the lake with Georgia Blind Sports kayaking, taking  the secretary notes at a Georgia Association of the DeafBlind meeting, or participating at a Northwest Georgia Council for the Blind lunch and learn!

 

Mary Gyori

Board Member
Development Committee Chair

I live in rural Vermont, part of a blended family with four adult children.  Our middle son, Sasha, lives an active life with deaf-blindness and intellectual disabilities, as a result of prematurity. We’ve thrived over the years only by partnering with other families, caring professionals, and politicians at the local, county, state, and regional level, learning from and empowering each other. I joined NFADB shortly after its founding in 1994. Since 1999, Sasha has lived at Black Mountain Assisted Family Living, a small nonprofit of which I am a founding board member.  I joined the NFADB board because, through the years, the support and inspiration of other families has kept me energized, and now that I’m retired, I have time to devote to the national Deaf-Blind community.


LISA LOPATOFSKY

Board Member 

live in Waymart, Pennsylvania with my husband and three young daughters.  My two oldest have Usher Syndrome Type 1b and my oldest was also diagnosed with Vestibular Migraines.  I am the Vice President of the Pennsylvania Partnership for the DeafBlind, as well as a member of the PA Deaf-Blind Advisory Committee.  I work as a Parent Mentor with the Family Connections for Language and Learning Program and volunteer as a Peer Supporter with Parent to Parent of PA.  I am also a member of various organizations that support the Deaf, Blind, and DeafBlind and am excited to join NFADB’s Board to help further the organization’s mission as well as support my girls and others like them. 

 

SARAH STEELE

Board Member 

I am from Syracuse, NY and received my B.S. from Syracuse University in Education and psychology. I currently live in Austin, TX where I work as a classroom teacher for students who are DeafBlind at the Texas School for the Blind and Visually Impaired. I am in my final year of obtaining my M.Ed. in Special Education, my certification for Teacher of Students with Visual Impairments as well as my graduate certificate as a Teacher of Students who are DeafBlind at Texas Tech University. I am passionate about family engagement for the field of DeafBlind education and listening to the stories of individuals who are DeafBlind. I am honored to serve as a professional member of NFADB and have the opportunity to work towards more inclusive opportunities for the many members of the DeafBlind community and their families.


alexis ramirez

Board Member 

I live in California with my husband, daughter, son and our labradoodle. My son was diagnosed with CHARGE syndrome as an infant.  We have found an amazing community by joining various organizations that support individuals with Deafblindness. Finding these communities has been invaluable to our family and I felt a huge pull to become more involved and give back.  In addition to joining the NFADB board I am a co-family Liaison for the CHARGE syndrome foundation in California.  I have a background in advocacy and community development, and am excited to learn more from working with NFADB. More than anything I am looking forward to being more involved with families, learning from individuals with Deafblindness and their loved ones. 


ricky teed

Board Member 

I live in Iowa with my wife and 5 amazing kids. My daughter with CHARGE Syndrome is deafblind. It has been a team effort, between my wife and I, to raise our deafblind daughter. We have learned many things along this journey, but no matter what, there is always a new surprise around the corner as the years go on. I've always had an innate desire to try and improve the "system" so that my daughter and everyone else with deafblindness can have more access to not only education, but the world around them. I joined NFADB to show support for the deafblind effort. As a board member, I hope I will be able to support the NFADB and their mission with empowering families with individuals who are Deaf-Blind. 


amanda schwartz

Board Member 

I live in Vermont with my boyfriend and two dogs, and am an Aunt to a 5 year old with CHARGE syndrome who lives in Florida. Living so far away, it has been important to me to find ways to get involved in the DeafBlind community as a family ally so that I can help support my family from afar, as well as other families in need of resources and community across the country. I am excited to be working with NFADB to provide invaluable resources to families of DeafBlind children and adults and look forward to leveraging my skills to help the organization continue to achieve its mission. 


kimberly moritz

Board Member 


I live in rural Ohio with my amazing, supportive family including my son who is deafblind from viral encephalitis at the age of ten.  We have worked hard to make the most out of a significant, life-changing event by learning, practicing, pausing, learning some more and restarting many times.  I strongly believe in partnerships with multiple agencies to support the needs of our friends and family members who are deafblind.  I have been in education for over twenty years and currently work as an education consultant.  I have also had the opportunity to serve as an advisory board member for our regional children's hospital and several state-wide agencies that support families and students with disabilities.  I look forward to the opportunity to support the transition to adulthood and education for ALL through NFADB.  

NFADB Special Advisors

 

Megan Cote

Special Advisor & NCDB Liaison

I am from Kansas where I live with my husband and 3 children.  I started my career as a classroom teacher and then moved to providing technical assistance to teams serving children with Deaf-Blindness.  Presently I am working as a Project Specialist for the National Center on Deaf-Blindness for early Identification/Referral and Family Engagement.

 

Peggy Malloy

Special Advisor & NCDB Liaison

I started my professional life as a registered nurse working in pediatrics and neonatal intensive care.  I later changed careers and became a librarian.  I was introduced to Deaf-Blindness when I started working for DB-LINK, a national information center.  DB-LINK ultimately became part of the National Center on Deaf-Blindness, where I still work almost 20 years later.

 

CYRAL MILLER

Special Advisor

I live in Austin, Texas, where I am a TVI and mother of two adult children.  I am the former Director of the Texas DB Project (1990-2018) and currently working part-time as a VI Outreach teacher with the Texas School for the Blind and Visually Impaired (TSBVI) Outreach Programs.  I attended the University of Texas at Austin for my TVI certification coursework.  My first teaching job was as an itinerant TVI in San Antonio and then I taught in a VI elementary resource room in Austin ISD.  A few years off, getting a master's in public affairs, a year of wandering to England, a stint working for the City of Austin and I was back in the VI field as an assistant to the TSBVI Superintendent and then became Outreach Director, which included supervising the TX DB Project.  I am thrilled to have a chance to work closely with the NFADB Board, who are innovators and advocates par excellence!


KRISTEN LAYTON

Special Advisor

started working with individuals who are DeafBlind when I was a 16 year-old volunteer at the Helen Keller National Center and it has been my life’s work since then. I started my career working with adults at HKNC and then working with children as a teacher and with the national DeafBlind project (then called NTAC) as a TA provider. Other amazing experiences include working with the Maryland DeafBind project, Boston College, the Education Development Center (EDC) and then living overseas and working with Perkins International as the Director of the Middle East program and Perkins India. I’m currently serving as the Director of Information, Research and Professional Development at the Helen Keller National Center. 

I live in Port Washington, New York, with my husband and two amazing teenagers. We love spending time traveling, hiking and exploring NYC. 

OUR MISSION:  NFADB exists to empower the voices of families with individuals who are deaf-blind and advocate for their unique needs.

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CONTACT US

Phone: 800.255.0411
Fax: 516.883.9060

Email: info@nfadb.org

MAILING ADDRESS

PO Box 1667
Sands Point, NY 11050

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