Board Members
NFADB Executive Committee
President: Susan Green
Email:mshrg2@aol.com
My name is Susan Green. I am married to Michael and have two beautiful teenage daughters, Hannah and Rachel. We live in Erie, Pennsylvania. Hannah has a genetic syndrome called CHARGE Syndrome. She is deaf-blind and has autistic spectrum disorder. Through the years I have enjoyed and learned a great deal from other parents and children. NFADB is important to me due to the fact that we are family driven. Please feel free to contact me if I can be of any assistance to you.
Vice President: Janette Peracchio
Email: jbperacchio@gmail.com
I live in Coventry, CT with my husband Bill. We have two grown children: Greg and Sandra. Our daughter Sara passed away in 2004. She was born with Cornelia de Lange Syndrome and was deaf blind. She was a wonderful teacher of persistence, acceptance, and unconditional love and for all of us. I work as a Family Specialist for the New England Center Deaf Blind Project, located at Perkins School in Watertown, MA. I am also working for the Cornelia de Lange Foundation as a Family Service Coordinator in Avon, CT. As your Region 1 Director, I represent the New England States of CT, MA, ME, NH, VT, RI. I look forward to working with families and professionals as we work to improve the lives children and adults who are deaf blind. Please contact me with your concerns and issues you are struggling with in your state. Working together, we may be able to make a difference.
Treasurer: Cynthia Jackson-Glenn
Email: cynthia.jackson-glenn@rsc.ohio.gov
Cynthia offers a background in deaf-blindness as a result of being a parent of a 38 year old daughter, Nafisa, who is deaf-blind. Her advocacy gives her experience as a facilitator and presenter for local and national conferences and parent workshops. She has her Master of Science degree as a Certified Orientation & Mobility Specialist from Pennsylvania College of Optometry in Philadelphia and served in that capacity at Clovernook Center f/t Blind and Visually Impaired in Cincinnati. Presently, she works for Ohio Rehabilitation Services Commission as a Vocational Rehabilitation Counselor at Bureau of Services for the Visually Impaired. Cynthia has contributed as a consultant on accessibility for the blind for several projects and is also a Low Vision Specialist. Her major areas of advocacy are focused on 'person-centered-planning' and 'transition into adult life.' Cynthia's hope is that all of her experiences in this field can be of benefit to the families she serves through NFADB.
Secretary: Paddi Davies
Email: paddid@gmail.com
I live in Monmouth, Oregon with my husband, John. Our four children and four grandchildren live nearby and fill our lives with happiness and chaos. I worked at The Teaching Research Institute at Western Oregon University in the field of deaf-blindness for over twenty years. I find great joy in working alongside families to improve the quality of life for their children and the rest of the family. I feel very privileged to be one of the first “professionals” on the NFADB Board.
Board of Directors
Sheri Stanger
Email: SheriMEd@aol.com
My name is Sheri Stanger and I am a Past President for NFADB (2002-2006) and currently a Board Member. My background is in Special Education and School Counseling. I have served on the Board of Directors for NFADB for the past 13 years and it has been a wonderful experience meeting and working with families throughout the United States as well as from other countries. I currently serve on the Affiliations Committee, the Web Site Committee, served as the Nominations and Board Development Committee Chairperson for the past few years, worked with our Legislative Team and I am the Program Chairperson for the upcoming NFADB Symposium in 2012. I live in New York with my husband Neal and we are the parents of 2 children, Megan and Matthew. Megan is visually impaired and hearing impaired and has CHARGE syndrome. She was the reason I joined this organization. I am very interested in advocating for the rights and needs of families that have a member who is deaf-blind as well as building a strong family network throughout the country. I encourage families to stay involved and informed and become members of NFADB. Please feel free to contact me with any questions you may have about this organization.
Blanche Stetler
Email: JTMommy@aol.com
My Name is Blanche Stetler. I live in New Jersey and am the parent of two wonderful children. Jessica is a Special Education teacher and Tim is deafblind and works at Petco part-time and the rest of the time he works at brightening everyone's day with his wonderful personality. I have been the Family Specialist on the New Jersey Deafblind project (NJCDB) and also sit on the State Special Education Advisory Council. My husband Bob and I have been married over 34 years and love helping other parents navigate the Social Services highway. Hopefully the road will be less bumpy in the future.
Pearl Veesart
Email: pearlve@sbcglobal.net
I live in Los Osos, California (near San Luis Obispo) with my two children, Ryland and Corrina. Corrina is deaf-blind from an unknown cause. Through my efforts to support her I've come to know a wide range of people and issues connected to the lives of individuals who are deaf-blind and their families. In addition to being on the NFADB board, I also serve (or have served) on a variety of local, state and national committees geared toward improving the lives of people who are deaf-blind. As a parent, I know how important it is to feel confident that our children are living good lives and receiving appropriate services. I enjoy working with others in the ongoing effort to improve the quality-of-life of,,and services to, people who are deaf-blind. Please be in touch with me, if I can be of service to you. Thank you for your interest in NFADB.
Veronica Castillo
Email: Bunnycast@aol.com
My name is Veronica Castillo, I live in Phoenix, Arizona, and have been happily married for over 20 years and am the proud mother of 3 grown children and 5 beautiful grandchildren. One of which, my grandson, Lorenzo, who we help our son raise, is DeafBlind with other special needs. He is the reason I became involved with NFADB.
I have worked with youth and families in various capacities for over 25 years, ten of those years have been working with non-profits which served disadvantaged youth and/or families with special health care needs in various capacities. From program development and management, to grant writing and compliance, to direct services I bring various experiences to NFADB. I am also a skilled coalition builder involved with several community organizations and state agencies which allows me to advocate for persons with various disabilities. I currently am the Parent Liaison for the Arizona Deaf Blind Project, where I am receiving training on becoming an Intervener. I have also assisted other families in developing transition portfolios to ease the transition from Early Intervention services to Preschool programs. I am excited about the opportunity to help other family members experiencing deaf blindness. Though I am a “rookie” to the full experience, due to my grandson’s age, I feel that I have a lot to share, as well as a lot to learn from the “veterans”. Their experiences can provide an excellent background for me to represent other families living with deaf blindness. In my free time I enjoy spending time with my family, advocating for causes close to my heart, organizing and planning events, giving back to my community, listening to music, reading, shopping, and traveling. Please feel free to contact me if I can be of any assistance to you.
Patti McGowan
Email: psa60@comcast.net
My name is Patti McGowan and I live outside of Pittsburgh, PA in North Huntingdon Township with my husband and three children. Our youngest son is Deaf-Blind and is diagnosed with Usher Syndrome Type II. I came to Pennsylvania from North Carolina after a knee injury ended my career as a professional ballet dancer. I graduated with a Bachelor of Arts degree from Point Park University and continue to teach ballet. I like to share with others that I have two careers that I love; my chosen career in the Fine Applied and Performing Arts and my given career in the field of Deaf-Blindness. I hope to bring my personal life experience as a parent to a child with deaf-blindness and my knowledge and skills to the board of National Families Association with Deaf-Blind (NFADB) as well as supporting other families on a National level. “I am eager to share with other families my personal life experience and the knowledge I’ve gained from various resources on both a state and national level; we can learn so much from one another”. Currently, I hold a staff position of Family Liaison with the Pennsylvania Deaf-Blind Initiative. Among my associations on a local, state and National level, I am an Advisory Council Board member to the Pennsylvania Deaf-Blind Initiative and a board member to Pennsylvania Partnership for the Deaf-Blind (PPDB) an affiliate of National Families Association with Deaf-Blindness (NFADB).
Edgenie Bellah
Email: Bellahbunch@yahoo.com
My name is Edgenie Bellah and I’m one of the newest members of the NFADB Board. Professionally, I serve on the Texas Deafblind Project as the family support specialist. Prior to joining the project, I worked for the Texas Commission for the Blind as an orientation and mobility instructor, children’s program specialist, and state-level children’s program administrator. I live in Leander, a suburb of Austin, Texas and am happily married to Robert Bellah. Together, we have three sons who share our passions for fun, food and serving.
Working within the deafblind community for nearly twenty-five years, I’ve been blessed to witness firsthand the improvement of service systems because of the leadership and passion of families who have children with deafblindness. I encourage NFADB members to always remember your power as family leaders and advocates. Your personal experiences can influence the decision makers! It is a huge honor to be part of the NFADB Board! Please feel free to contact me if I can support you in any way.
Elisa Sanchez Wilkinson
Email: elisasw@salud.unm.edu
My name is Elisa and I am a wife and a mother of two children with both of my parents living. My oldest child is 18 years old with dual sensory impairment, ambulatory issues, ADHD and executive function issues. I have worked as a Family Resource Specialist at the University of New Mexico’s Center for Development and Disability in the Project for NM Children and Youth Who are Deaf-blind for over 10 years. I am involved with supporting Patient and Family Centered Care through presentations and committees at the University of NM Children’s Hospital. I have had experience as a medically fragile pediatric home health care nurse as well as a camp nurse for summer programs for children with disabilities. I have been a board member of NFADB in the past and I am excited to rejoin the board and continue with the mission of NFADB.
Special Advisors
Linda Syler
Email link: l.syler@cox.net
My name is Linda Syler and I am the immediate past president and special advisor of NFADB. I live in Peoria, AZ with my daughter Jennifer. Jennifer is 34 yrs old and the reason I am involved in NFADB. We moved here from northeast Ohio in December of 2007. My son Jay and his wife also live in Peoria. I have been active in the organization for over 15 years, serving as a regional director, treasurer and now the immediate past president and special advisor. Jennifer was not identified as deaf-blind until she was 18 years old. We had attended various conferences and workshops and just never felt we were in the right place. After she was identified we were able to attend a workshop and conference on deafblindness and for the first time we fit. It was wonderful to be around other parents who had shared some of the same experiences I had in raising Jennifer. Realizing I was not the only parent with a child with hearing and vision loss was empowering. This is why it is so important for us to reach as many families as possible so they too can receive the support and tools that they need to advocate for their own child. That is why I give of my time to NFADB so that other parents will not feel that sense of isolation and know that they are in this alone.
Kathy McNulty
NCDB
Email: Kathy.mcnulty@hknc.org
Nancy O'Donnell
Helen Keller National Center
Email: nancy.odonnell@hknc.org
Betsy McGinnity
Hilton/Perkins Program Project Officer
Email: Betsy.mcginnity@perkins.org
Joe McNulty
Helen Keller National Center Executive Director
Email:hkncdir@aol.com
Jane Ryan, CPA, PC
Accountant
Michael Williams
Webmaster
Email:nfadbwebperson@att.net
International Liaison
Clara Berg
Email: Clara.Berg@qc.cuny.edu
Phone: 718.428.1591
I was born in Uruguay and moved to NY in 1977. My husband Jake and I have three children: Sheldon, Kenny, and Karen, who are very close in age and keep us young and active. Our middle son, Kenny, was born very premature when doctors were trying to figure out how to save newborns under 2 lbs. He is deaf-blind due to his prematurity. Thanks to a lot of support throughout his life, as an adult he now works at the only farm in Queens, New York, with the support of a job coach/family support specialist. His daily duties include gathering eggs from the chicken coops, feeding the rabbits and working in the field with the crops. A few years after Kenny was born I wanted to learn more about deafblindnesss and I volunteered to work with the New York State Deafblind Project. That opportunity became a lifelong commitment and I have been working as the Family Specialist with the Deafblind Project for over 20 years. I’m also a consultant for the Hilton Perkins Program, training parents in Latin America, Poland and the U.S. in issues around transition and person centered planning. I’m a founder, first President and still a very active board member of the New York Parent Network. I have been involved with NFADB in various capacities since its original planning in 1992. I enjoy my position as the International Liaison because it gives me the opportunity to practice different languages, learn more about other cultures and how they approach issues around deafblindness, and it allows me to share with NFADB’s membership what's going on in other parts of the world. If you have information you would like to share, please contact me!
Administrative Assistant
Lori Bookstaver
Email: mfnfadb@aol.com
