Patti McGowan

President

Adult Life Committee Co-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 deafblind and became a board member in 2009. I work as one of the two-family engagement consultants with the Pennsylvania Deafbllind Project. I have had the following opportunities to work as a consultant with National Center on Deafblindness (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: Deafblind Intervener Modules.  I enjoy supporting families in all aspects of advocacy and leadership.  

Donia Shirley

Vice President

Outreach Committee Co-Chair

I 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.

Edgenie Bellah

Board Member
Affiliate Committee 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.

Jacqueline Izaguirre

Board Member

Policy, Information, and Education Committee Chair

My husband and I live in Texas and have three adult children. Our middle child is Deafblind due to a Ciliopathy. In addition to NFADB, I am a board member of the National Coalition on Deafblindness, and a founding board member and current 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 Deafblindness. 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. 

LISA LOPATOFSKY

Board Member 

I 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 Deafbllind 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. 

Myrna Medina

Board Member

I am native of Mexico, and live in California, where I got married and had two children.  My youngest child was born with Deafblindness 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.

kimberly moritz

Board Member 

Adult Life Committee Co-Chair

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.  

lissa elkins

Board Member

My husband and I live in Tennessee with our five children; four of them are girls and our youngest is a boy. We refer to him as our “mighty lion.” He has Stickler Syndrome, a progressive connective tissue disorder that causes deafblindness. As the mama lion, I sought community, understanding, and hope after his diagnosis. I have been so fortunate to build an amazing network of support, with the NFADB being one of those invaluable resources. My goal as a board member is to “pay it forward,” and provide a small light for others on their own journeys with a deafblind child. I am passionate about early intervention, sibling support, and inclusion/access for children with different needs like my son!

nancy giurato

Board Member

Hello, I'm delighted to share a bit about myself as a newly elected board member at the National Family Association for DeafBlindness. My journey into advocacy and support for families with unique challenges has been profoundly influenced by my own family's experiences.

My husband and I have made North Carolina our home, where we cherish every moment with our two amazing children, both of whom have special health care needs. Our daughter's life began with a chromosomal abnormality that produced complex medical issues and DeafBlindness. My background in medical research and public health management uniquely prepared me to become her dedicated caregiver.

I've been privileged to channel my experiences into a mission of support. As a parent educator at North Carolina's Exceptional Children's Assistance Center, I empower special needs families and those with deafblind members. I also proudly serve as the NC DeafBlind Project Family Engagement Coordinator and collaborate as a team member with the NC Family to Family Health Information Center.

My goal as a board member is to contribute to NFADB's mission by fostering strong relationships and partnering with organizations to address the ongoing needs of our community. Together, we can make a positive impact and ensure that no family faces the challenges of DeafBlindness alone.

Gordon boe

Board Member

I live in southeastern Pennsylvania.  My wife, Mary, and I raised our granddaughter who was DeafBlind with multiple health issues, from 1996 until she passed away in her sleep in 2019.  We started attending the Pennsylvania DeafBlind Project’s Family Learning Weekends in 1997.  Through our involvement, we became founding members of the Pennsylvania Partnership for the DeafBlind (PPDB) in 2007.  I have been an NFADB member shortly before NFADB named PPDB its first State Affiliate.  

Even though we lost our granddaughter in 2019, and Mary died 16 months later, I have stayed involved with NFADB in a number of ways, including attending two cycles of the “Sensing Connections” Grief Group sessions, participating in the FATE training, taking part in the 2023 “Day on the Hill,” and providing input to this year’s Steve Perreault Award committee.  All these experiences have given me the opportunity to meet incredible, inspiring family members and professionals, and I am excited to make any contribution I can to this great organization!

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 Deafblindness.  Presently I am working as a Project Specialist for the National Center on Deafblindness 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 Deafblindness when I started working for DB-LINK, a national information center.  DB-LINK ultimately became part of the National Center on Deafblindness, where I still work almost 20 years later.