Menu
Log in
Forgot password


Log in

Become a Member

Donate

NFADB Board of Directors


jacqueline izaguirre

President
Texas

"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 NFADB, and so many amazing individuals who generously share their advocacy, knowledge, and passion for supporting the DeafBlind community.

In addition to NFADB, I also serve on Boards for the National DeafBlind Coalition and the DeafBlind Community of Texas."


lissa elkins

President-Elect
Tennessee


"I have five children; four 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, with NFADB being one of those invaluable resources.


My journey has shaped my passion for advocacy, supporting families, and creating a sense of connection and belonging."

Donia Shirley

Past President
Vermont

"I am the Mom to two beautiful boys.  My youngest son was born with CHARGE Syndrome, and is DeafBlind. I joined the 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.

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


Kristi arsenault

Vice President
Policy, Information, and Education Committee Co-Chair
Maryland


"I am proud to serve on the Board and to support the DeafBlind community through outreach and advocacy efforts. I have a beautiful 10-year-old daughter who is DeafBlind. She 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."

 


Edgenie Bellah

Secretary
Affiliate Coordinator
Texas


"I’m honored to serve on the NFADB Board as a professional member. My husband and I share life with our three adult sons and daughter-in-law. Since 2002, I’ve served as the Texas Deafblind Project Family Engagement Coordinator, bringing my perspective as a certified Orientation & Mobility Specialist to my work across the lifespan.

My best teachers have been my own family, friends, and the families I’ve had the privilege to partner with along the way. They keep me passionate about community and following family leaders in system change efforts."

HEATHER SNYDER

Treasurer
Pennsylvania

"I am thrilled to participate in NFADB as a professional member, and serve as Treasurer.

I work as a Teacher of the Deaf/Hard of Hearing, serve Early Intervention families, and hold the state contract for SSP/CN services. I am a Board Member for the Western PA School for the Deaf and lead the SSP/CN Subcommittee for the National Community of Practice with the Helen Keller National Center (HKNC).

Working alongside Deaf, Hard of Hearing, and DeafBlind individuals has enriched my life and inspired my commitment to advocacy and empowerment."



Jana villemez

Board Member
Member Engagement Coordinator
Arkansas


"I am proud to serve on the Board of NFADB. As a licensed clinical social worker, my background includes hospice, palliative care, and behavioral health. For the past 15 years, I have partnered with families of children who are DeafBlind, as a Family Engagement Coordinator for the state of Arkansas and as the Family Engagement Initiative Lead for the National Center on Deafblindness.

Currently, I provide consultation in family engagement, with a deep commitment to meeting families where they are, elevating family voice, and contributing to meaningful systems change. On a personal note, I am a proud sibling to a niece with Prader-Willi Syndrome, and I cherish my roles as a wife, mother, mother-in-law, and grandmother."


nancy giurato

Board Member
North Carolina

"My passion for advocacy is deeply rooted in my own family’s journey. My husband and I have 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
Social Media Coordinator
Utah


"I am a disability advocate, writer, and parent leader based in Utah.  I am the mother of a child with CHARGE syndrome, who is profoundly DeafBlind.  My lived experience navigating complex medical and educational systems for my daughter has shaped my commitment to advocacy. I serve on advisory councils supporting DeafBlind and disabled students, have worked on several local political campaigns, and aim to elevate family voices in policy, education, and community spaces.

I am passionate about building inclusive systems where individuals who are DeafBlind and their families are seen, supported, and empowered!"



kimberly moritz

Board Member
Ohio


"My son 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 NFADB!"



Michelle John

Board Member
Vermont


"I am President of Vermont Hands & Voices and a Regional Coordinator for Hands & Voices Regions 1, 2, and 3. As a former stay-at-home parent, I raised and educated my three children, including my 11-year-old DeafBlind+ child with significant medical and developmental complexities.

I am passionate about family leadership,  DeafBlind+ needs, parent caregivers, storytelling and lived experience, sibling support, and the unique challenges faced by rural families. Through ongoing trainings, conferences, and presentations, I stay current on best practices and build connections that help families across the U.S. and Canada access valuable resources and support."



NFADB Special Advisors

 

MEGAN COTE

Special Advisor and NCDB Liasion
Kansas

"I am married with three wonderful children. I earned my master's degree in Severe Multiple Disabilities/Deaf-Blindness from the University of Kansas and have dedicated more than 30 years to the field of special education. I began my career as a classroom teacher before transitioning to providing technical assistance to teams serving children who are deafblind.

Throughout my career, I have coordinated multiple state-level grants, taught graduate coursework, directed the Kansas DeafBlind Project, and served in a variety of leadership roles in the field. Since joining the National Center on Deafblindness (NCDB) in 2015, I have worked as a Project Specialist, focusing on family and network engagement. 

I believe that when families feel supported, better outcomes are achieved for the child.  It's an honor to serve as a Special Advisor for NFADB!"

 


Cyral Miller

Special Advisor
Texas


"I am a TVI and mother of two adult children. I’m the former Outreach Director and Coordinator of the Texas DeafBlind Project (1990–2018), now working part-time as a TSBVI Outreach teacher.

I began my career as an itinerant TVI in San Antonio, later teaching in a VI elementary resource room in Austin ISD.  I earned a Master of Public Affairs, spent time in England, and worked briefly for the City of Austin before returning happily to the VI field to work at TSBVI. 

I’m thrilled to collaborate with the NFADB Board, a group of exceptional family innovators and advocates!"


CONTACT US
info@nfadb.org


Mailing address:
45 Main St., Ste 240 PMB 824519
Brooklyn, NY 11201-1098


 

Powered by Wild Apricot Membership Software