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NFADB Board of Directors


jacqueline izaguirre

President

A native Texan, I am the proud mother of three grown children and grandmother to four little blessings. Like so many of you, my daughter’s DeafBlind journey has not always been an easy one, it ultimately led me to the National Family Association for DeafBlind (NFADB). Through NFADB, I have found a wonderful community of amazing individuals who generously share their advocacy, knowledge, and passion for supporting the DeafBlind community.

In addition to working on the NFADB Board, I also serve on the National DeafBlind Coalition Board and the DeafBlind Community of Texas Board.


lissa elkins

President-Elect
Policy, Information, and Education Committee Co-Chair


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!

Donia Shirley

Past President

I live in Vermont 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 also the CHARGE Syndrome Foundation State Liaison for the State of Vermont and serve as a Patient and Family Advisor at our local Children's Hospital.


Kristi arsenault

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


I am honored to serve as a board member of NFADB and to support the DeafBlind community and families through outreach and advocacy efforts. I have a beautiful 10-year-old daughter who is DeafBlind and is so full of life and loves everyone she meets. Over the past several years, I’ve been grateful to participate in and co-facilitate the Family-to-Family Communities (F2FC) program, connecting families of individuals with DeafBlindness.  I love doing research and using my skills to help others, and I'm looking forward to being part of the NFADB board and family. 


 


Edgenie Bellah

Secretary

I’m honored to serve on the NFADB board as a professional member. Based in Texas, my husband and I share life with our three sons and daughter-in-law, grounded in fun, food, and service. I’ve been the Texas Deafblind Project Family Engagement Coordinator since 2002 and work as a certified Orientation & Mobility Specialist supporting adults with complex disabilities in defining their good life.

My experience spans the lifespan; from early childhood through older adulthood, across education and 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.


kimberly moritz

Board Member 
Adult Life Committee 


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’ve worked in education for over 20 years and currently serve as an education consultant. I’ve also contributed as an advisory board member for our regional children’s hospital and several statewide agencies supporting individuals with disabilities. I’m excited to support education and the transition to adulthood for all through NFADB.


nancy giurato

Board Member

My passion for advocacy is deeply rooted in my own family’s journey. My husband and I live in North Carolina with our two children, both of whom have special health care needs. Our daughter’s chromosomal condition led to complex medical challenges and DeafBlindness, shaping my path as both a caregiver and advocate.

Professionally, I support families as a parent educator at the Exceptional Children’s Assistance Center, serve as the NC DeafBlind Project Family Engagement Coordinator, and collaborate with the NC Family to Family Health Information Center.

As a board member, I’m committed to building strong partnerships and ensuring families impacted by DeafBlindness feel supported, connected, and never alone.

kari harbath

Board Member

Kari Harbath is a disability advocate, writer, and parent leader based in Ogden, Utah. She is the mother of Sloan - a child with CHARGE syndrome who is profoundly DeafBlind. Kari's lived experience navigating complex medical and educational systems for Sloan has shaped her commitment to advocacy. Kari serves on advisory councils supporting DeafBlind and disabled students, has worked on several local political campaigns, and aims to elevate family voices in policy, education, and community spaces.

Through her writing, public speaking, and community involvement - Kari focuses on disability rights, mental health awareness, and family support. She is passionate about building inclusive systems where individuals who are DeafBlind and their families are seen, supported, and empowered.


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.

 

CYRAL MILLER

Special Advisor

I live in Austin, Texas, and am a TVI and mother of two adult children. I’m the former Director of the Texas DeafBlind Project (1990–2018) and now work part-time as a VI Outreach teacher with TSBVI. I completed my TVI certification at the University of Texas at Austin and began my career as an itinerant TVI in San Antonio, later teaching in a VI elementary resource room in Austin ISD. After earning a master’s in public affairs, spending time in England, and working for the City of Austin, I returned to the VI field, first as assistant to the TSBVI Superintendent and then as Outreach Director overseeing the TX DeafBlind Project. I’m thrilled to collaborate with the NFADB Board, a group of exceptional innovators and advocates.

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

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Phone: 800.255.0411
Fax: 516.883.9060

Email: info@nfadb.org

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