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- NFADB Board
NFADB Board of Directors |
Donia ShirleyPresidentI 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. |
KATRINA MICHEL Vice President 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 Deafblind 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 |
lissa elkinsBoard MemberPolicy, Information, and Education Committee Co-ChairMy 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 giuratoBoard MemberHello, 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 boeBoard MemberI 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 |
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! |
