NFADB Board of Directors


Patti McGowan

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.  


Diana Griffen

Vice President
Nominations Committee Chair

I joined the board to continue the work of my mother, Mary O'Donnell, who was one of the founders of NFADB.  I live in Exton, Pennsylvania with my husband Charlie.  I work as a nurse and community volunteer, and we have three adult children.  I am co-guardian with my brother Tim for our sister, Sara, who has been Deaf-Blind since birth as a result of congenital rubella syndrome.

Jacqueline Izaguirre

Finance Committee Chair
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!

Donia Shirley

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. 


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.

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 Vermont, part of a blended family with four adult children.  Our middle son, Sasha, is Deaf-Blind as a result of prematurity.  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 it's now time for me to give back to the Deaf-Blind community.

Janet Murray

Board Member 

I live in Massachusetts with my husband and family.  We have seven children, including a set of twins.  One of our twins has CHARGE Syndrome.  Although he has useable vision and hearing, the combination of dual sensory loss greatly impacts his ability to navigate adult life.  I joined the NFADB Board not only to learn more about what I can do to assist Justin, but also to help reach other families who need support.

john butterflies

Board Member 

I live in Kansas City, Missouri.

I've advocated for and created art with deaf-blind persons for more than 20 years at and as the Special Rappoteur for the Greater Kansas City Deaf-Blind Collaborative.



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.

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.



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!

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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