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  • 30-Sep-2021 12:00 AM | Anonymous member (Administrator)

    NFADB President’s Message, Fall 2021

    Greetings NFADB Members,

    It is my pleasure to formally send greetings to NFADB members in my biannual President’s Message. Thank you for your ongoing support of and engagement with the National Family Association for Deaf-Blind. Without you, we could not continue our mission to empower the voices of families with individuals who are deaf-blind and advocate for their unique needs. Together we are better!

    October 1 begins NFADB’s 28th fiscal year as a nonprofit 501(c)(3) organization serving families. As we begin our new year, it is an honor to introduce two new board members, Lisa Lapatofsky (PA) and Katrina Michel (FL). Both are parents to young children who are deaf-blind and hold executive positions with their state NFADB Affiliates—the Pennsylvania Partnership for DeafBlind (PPDB) and the Family Partners for the DeafBlind of Florida and the U.S. Virgin Islands (FPDB-FL/VI). The NFADB executive committee also congratulates board member Donia Shirley as she steps into the role of NFADB secretary.

    NFADB will hit the ground running this fall and in the coming months with multiple events, trainings, and opportunities. For more information, see the “Upcoming Events” section of our website,  Events

    October 2021:

    • NFADB Cogswell-Macy Act (CMA) Twitter Blast, October 1 through 7
    • The Family Advocacy Training & Education (FATE) Phase I begins October 7 with national family organizations and NFADB Affiliates
    • Nominations begin for the 2022 Steve Perreault Award (professional recognition year)
    • October 9 (parents) and October 16 (students) virtual table at the Transition Fair for Students Presented by the Indiana Deaf-Blind Services Project and Helen Keller National Center for Deaf-Blind Youths and Adults
    • October 20 “Got Transition” webinar on the transition from pediatric to adult health services

    November and December 2021:

    • Family Advocacy Training & Education (FATE) continues 
    • Family Focus Chats (dates TBD)
    • Nominations for the Steve Perrault Award close at the end December

    January 2022:

    • Phase II of the Family Advocacy Training & Education (FATE): Facilitation of National Advocacy Agenda

    February 2022:

    • Phase III of Family Advocacy Training & Education (FATE):

    Day on the Hill

    A glance back at a few highlights, celebrations, remembrances, and events from my last report.

    September 2021:

    • NFADB joined the Deaf-Blind Multihandicapped Association of Texas (DBMAT) Virtual Camp Conference 
    • NFADB’s 5th Annual Deaf-Blind Experience—My Family’s Journey: Navigating Life’s Transitions
    • 2021-22 Family-to-Family Communities (F2FC) kick-off
    • Cogswell-Macy Act: A Family Focus Update 
    • Social Media stats: Instagram – 721 followers; Facebook – 3,168 followers, post reach – 4,764; Twitter – 344 followers

    August 2021:

    • NFADB Ambassador project begins training 13 NFADB Ambassadors across the country

    July 2021:

    • Annual NFADB General Membership Meeting
    • The Steve Perreault Award announcement – Congratulations to Clara Berg (NY) and Gordon Boe (PA)
    • Welcomed the California Deafblind Network of Family Support Providers as a new member of NFADB’s Affiliate Network
    • NFADB joined breakout discussions at the CHARGE Syndrome Foundation virtual conference

    June 2021:

    • Joe McNulty, 1947-2021. A life so beautifully lived deserves to be beautifully remembered. Joe was instrumental in the work and strengthening of NFADB and we will always be grateful for his support, wisdom, and guidance.
    • The Pennsylvania Partnership for the DeafBlind (PPDB), and NFADB Affiliate, presented at the PA Deaf-Blind Project’s virtual Family Learning Conference.

    May 2021:

    • NFADB developed a page on the website specific to families with adult children to share information, resources, and activities

    April 2021:

    • NFADB presented at the Southeast Regional DeafBlind Webinar Series

    March 2021:

    NFADB will continue to work hard for our members and families of individuals who are deaf-blind. Please take a few minutes to visit our website, meet the board, and volunteer with us. There are five wonderful working committees that all members are invited to join. If you have a special talent and or skill, please let us know!  We are in the deaf-blind community together and our voices can be heard!

    Wishing you and your families a wonderful fall and holiday season!

    Kind regards,

    Patti McGowan, NFADB President

  • 31-Mar-2021 7:03 PM | Anonymous member (Administrator)

    NFADB President’s Message, Spring 2021  

    Greetings NFADB Members,

    Spring is here! A new season, a new outlook, a fresh start. Each spring I look forward to writing this report as an opportunity to thank you for your membership and tell you about our ambitions for the upcoming months. Considering everything we have gone through together in the past six months, let alone this year to date, this report is especially important.


    It has now been officially over a year. A year of quarantine. A year of challenges.   NFADB has worked hard to stay connected and support our membership. We have continued to keep families informed of learning opportunities that we can all attend virtually and have expanded our social media platforms. This has allowed us to share announcements, lessons, webinars, videos, quick activities, networking opportunities, and more.  

    As I look back, I am humbled when I consider the number of members, agencies, and organizations that have depended on NFADB and partnered with us to support our families and members.  I appreciate the strong relationships we have built with all of you.


    Our 2021 spring, summer, and most likely the remaining months of this year will continue to look a bit different.  NFADB has not let the challenges of the pandemic distract us.  We continue to advocate, foster family-to-family relationships, promote partnerships, and provide information and resources. We are just wrapping up a wonderful opportunity as a partner for the 2021 Texas Symposium on Deafblind Education, where we joined forced with a network of families and colleagues from Texas, the USA, the Americas, and around the world. The Symposium included an excellent Family Day, and we were so honored to host the Mary O’Donnell Family Social, an NFADB tradition.

    Another ongoing learning opportunity to watch for is the Southeast Regional DeafBlind Webinar Series that began in March and will run through June 2021.  


    Mark your calendars for the annual NFADB Membership Meeting on Tuesday, July 13, 2021 (7:00-8:30 eastern). All members are invited. You will hear more about our Family Advocacy Project as well as the announcement of our first ever Steve Perrault Award recipient(s). There will also be information about the upcoming NFADB Annual Deaf-Blind Awareness Event slated for the fall of 2021.  We have a great deal to celebrate with our members and affiliates as the network grows. The past 27 years would not have possible without our loyal members and caring partners.

    While we cannot predict the future or what the remainder of 2021 will bring, we can promise you this: NFADB is committed to empowering the voices of families of individuals who are deaf-blind and advocating for their unique needs.

    May the coming seasons bring you brightness in each and every new day.

    With Gratitude,

    Patti McGowan 

    NFADB President 

  • 01-Oct-2020 1:00 AM | Anonymous member (Administrator)

    Fall Greetings NFADB Members,

    I am so proud of the strength and character of our deaf-blind community.  Like other organizations, NFADB is encouraged by and thankful for the support we have received from our members and partners during the pandemic, to ensure that our families with individuals who are deaf-blind are doing okay.  There has been so much change in a such a short period of time to the world around us—our families, friends, neighborhoods, gathering places, workplaces, and homes.  Life during COVID-19 has sparked fear, frustration, and anxiety.  It’s easy for distractions, criticism, and stress to creep in and overwhelm us.  We have had to make hard decisions, especially for our loved ones who experience deaf-blindness.  But if there is one thing I can say about families with individuals who are deaf-blind, it’s this—WE ARE RESILIENT!   We are a network, we support one another, and we will get through this.

    October 1, 2020 is the beginning of the new fiscal year for NFADB and in this letter I’ll update you about some changes and exciting opportunities for the coming year. First, I’m thrilled to announce that we will have the following four new members on our board of directors beginning October 1:  

    • John Butterflies from Kansas City,  Missouri
    • Janet Murray from Weymouth, Massachusetts 
    • Donia Shirley from Miami, Florida 
    • Sarah Steele from Austin, Texas

    Please take a few minutes to visit nfadb.org to learn more about these and other board members.  We want to hear from you, so feel free to reach out to any of us at any time.

    I wish to extend a special thank you to Edgenie Bellah, who will remain on the NFADB board, but is stepping out of her position as Affiliate Coordinator, which she has held for six years.  We as a board commend her efforts and leadership as the affiliate network has grown.  We encourage deaf-blind state and family-driven organizations to become affiliates of NFADB.  To learn more, go to our NFADB Affiliate Network web page

    On October 22, we will hold our annual Deaf-Blind Awareness Event.  This event is typically held in person at the People’s United Bank in Manhattan but will be virtual this year.  People’s United Bank has once again graciously agreed to sponsor it.  The theme is “My Family’s Journey: Advocacy, Self-Care, and Resilience.”  A virtual version will be a first for NFADB.  Much credit goes to our Development Committee for boldly stepping up to the challenge and planning and implementing what we hope will be a successful event that you can attend from the safety of your home.  For more information and to register or donate, visit our NFADB Deaf-Blind Experience web page (nfadb.org/fundraisers).  

    In late October, NFADB will announce the Steve Perrault Annual Award in honor and memory of our dear friend.  Steve was instrumental in the conception of NFADB and never stopped his support and advocacy for and with the NFADB board until his passing in October 2019.  We greatly miss Steve and have established this award to honor him on behalf of NFADB.  More information will be available soon.

    As 2021 draws near, we are looking forward to a collaboration and partnership with the Texas Deafblind Outreach Project and Deafblind International (DbI) to conduct the March 2021 Texas Education Symposium.  

    NFADB’s Policy, Information, and Education (PIE) committee is planning to lead family organizations and partner with the Deafblind Coalition on an advocacy training effort called the Family Advocacy Project.  Its purpose is to train family members who hold leadership skills to advocate on issues important to the field of deaf-blindness.  Participants will work together to develop actions and an agenda to advocate at both state and national levels.  NFADB’s mission is to empower the voices of families.  Our mission will strengthen as we unite on advocacy efforts.

    I always wish to encourage our members to become involved in NFADB activities.  I invite you to join a committee, share your family story, invite friends to become members, and donate to our organization.  We are up and running with an active Facebook page and Instagram and Twitter accounts.  These and our membership email blasts continue to promote and foster family-to-family relationships, provide information and resources, and invite members to take advantage of deaf-blind opportunities (both educational and social).

    In closing, I wish all of you a beautiful and colorful fall season that rolls right into an extended time of holiday cheer.  Thank you again for your ongoing support of NFADB.


    Patti McGowan

    NFADB President

  • 20-Mar-2020 9:11 PM | Anonymous member (Administrator)

    Dear NFADB Members,


    The past several weeks have presented all of us with personal health and family concerns never before seen.  In this environment, staying connected- for information, resources, planning, and emotional reasons-is more important than ever.  At NFADB, we are committed to being a reliable association to you and your family in difficult times, just as we are in good times.  We know you are the frontline in supporting your loved ones and individuals with deaf-blindness and NFADB wants to support you now more than ever.


    The overwhelming news on the coronavirus can be confusing and frightening to all of us.  We can’t know precisely when the coronavirus will be contained and familiarity restored.  Until then, please be assured that the NFADB Board of Directors are available to our members.   As a reminder, you can connect to NFADB info@nfadb.org anytime, and directly reach any of the board members by using their first name @nfadb.org.  We are sharing resources and information via our NFADB Face Book https://www.facebook.com/NFADB/  and Instagramhttps://www.instagram.com/nfadborg/  to keep our families and community connected and continue to share information.  


    NFADB exists to empower the voices of families with individuals who are deaf-blind and advocate for their unique needs.  We are in the deaf-blind community together and we are here for our members!


    Be safe and be well.



    Patti McGowan, NFADB President and Board of Directors


  • 01-Oct-2019 9:55 AM | Anonymous member (Administrator)

    October 2019 - President’s Bi-Annual Report  

    Dear NFADB Members,

    Fall Greetings from NFADB.  On behalf of myself and our current and newly elected board members, I would like to welcome you to the 2019-2020 year for the National Family Association for Deaf-Blind (NFADB). On behalf of myself and our new board, we look forward to working with all of you in the coming year. As we begin the new fiscal year (October 1, 2019), I would like to provide you with information to get us all started on making 2019-2020 another great year for NFADB.

    Although this report is a bit long, I hope that you will take time to review it carefully as there is important information to help you become involved with NFADB. It includes: (1) thanks to our outgoing board members; (2) election results and a complete list of board members; (3) committees and committee chairs; (4) NFADB’s organizational structure, (5) how to get involved—call for open positions and committee membership, and (6) a glance at the past six months.  Before the report begins, I would like to honor and recognize Steve Perreault.

    In Memory

    It is with great sorrow that we share the news that our dear friend and Special Advisor of NFADB, Steve Perreault, passed away. Steve was instrumental in the development of NFADB and a longtime supporter of families with individuals who are deaf-blind. Steve was a kind, caring friend to all and will be dearly missed by our deaf-blind community.  

    Outgoing Board Members

    We would like to thank Debra Pickens for completion of a one-year board vacancy position and for her service to NFADB’s Adult Life Committee. Debra did a tremendous job providing excellent resources about transitioning to adult life.

    A heartfelt thank you to Nancy O’Donnell, NFADB Special Advisor. Nancy has been with NFADB since its inception 25 years ago and will be an NFADB friend for life. Although she has stepped out of the formal role of Special Advisor, NFADB will always look to Nancy for guidance, mentorship, and historic information. We look forward to future collaborative events where we know our paths will cross.

    2019 NFADB Elections

    NFADB is a nonprofit organization made up of a volunteer working board of family members of individuals with deaf-blindness and two professionals. We have eleven board members, two special advisors, and one part-time employee, our administrative assistant.

    NFADB completed its election in June and announced the elected board at the July Annual General Membership Meeting. Please join me in welcoming new board members Nilam Agrawal (TX), Marvin Jones (OH), and Rebecca Cowan-Story (GA). I would like to thank everyone who ran for office and indicated interest in being appointed to open positions. You can learn about all our board members on the NFADB Board of Directors page on our website (https://nfadb.org/page-18080).  

    Current Board of Directors:

    Role & Name


    President, Patti McGowan

    Oct. 1, 2018-Sept.30, 2020                (1st  term)

    Vice President, Diana Griffen

    Oct. 1, 2019-Sept. 30, 2021               (2nd term)

    Treasurer, Jacqueline Izaguirre                          

    Oct. 1, 2018-Sept. 30, 2020               (2nd term)

    Secretary, Melanie Knapp                                     

    Oct. 1, 2019-Sept. 30, 2021               (1st term)

    Affiliate Coordinator, Edgenie Bellah

    Oct. 1, 2018-Sept. 30, 2020               (3rd term)

    Board Member, Nilam Agrawal

    Oct. 1, 2019-Sept .30, 2020               (1st term)

    Board Member, Mary Gyori

    Oct. 1, 2019-Sept. 30, 2021               (1st term)

    Board Member, Kim Huston                              

    Oct. 1, 2019-Sept. 30, 2021               (3rd term)

    Board Member, Marvin Jones                             

    Oct. 1, 2019-Sept. 30, 2021               (1st term)

    Board Member, Myrna Medina

    Oct. 1, 2018-Sept. 30, 2020               (1st term)

    Board Member, Rebecca Cowan-Story

    Oct.1,  2019-Sept. 30, 2021               (1st  term)

    Special Advisors:

    • NCDB Liaison Special Advisor: Megan Cote
    • NCDB Liaison Special Advisor: Peggy Malloy

    Administrative Assistant:

    • Allan Santiago

    Standing Committees

    • Executive Committee: The Executive Committee’s mission is to serve NFADB’s Board of Directors by researching, reviewing, and organizing information required for efficient consideration and strategic planning by the Board and optionally making recommendations or proposals based on such information.
    • Nomination Committee: The mission of the Nominations Committee is to carry out responsibilities related to NFADB’s nomination processes and procedures, as well as related matters required by NFADB Bylaws. Its key responsibility is to identify individuals qualified to be nominated for election to the board of NFADB. 

    Ad Hoc Committees

    For 2019-2020, NFADB will have seven ad hoc committees. Our goal for each is to provide a service for our members and for the association. The missions and committee chair for each ad hoc committee are as follows:  

    • Adult Life Committee – Chair, Patti McGowan

    The mission of the Adult Life Committee is to share information, resources, and activities that help individuals who are deaf-blind, and their families, dream, plan, strategize, and break down barriers, in order to attain a safe, happy, inclusive life for the family member who is deaf-blind.

    • Affiliate Committee – Chair, Edgenie Bellah

    The Affiliate Committee’s mission is to serve as a conduit for the NFADB Affiliate Network to partner in influencing national trends and legislation, providing a platform for leadership development, and promoting NFADB membership.

    • Finance Committee – Chair, Jacqueline Izaguirre

    The Finance Committee provides oversight responsibilities to ensure NFADB is fiscally responsible with respect to budgeting, safeguarding assets, financial reporting, and compliance with federal and New York State tax reporting.

    • Development Committee – Chair, Mary Gyori

    The mission of the Development Committee is to build relationships and enlist the help of individuals or organizations who support NFADB’s overall mission and can provide the financial support that will meet the specific ongoing needs and well-being of NFADB.

    • Membership Committee – Chair, Kim Huston

      The mission of the Membership Committee is to support NFADB goals by: 

    • Conducting recruitment campaigns
    • Developing and implementing innovative ways to attract new members
    • Retaining current members
    • Encouraging member participation in NFADB committees and activities
    • Maintaining an up-to-date membership list that can be used for NFADB outreach and fundraising
    • Outreach Committee – Chair, TBD-Full Board Participation 

    The mission of the Outreach Committee is to ensure that every family supporting an individual with deaf-blindness has an awareness of NFADB and our resources.

    • Policy Information and Education (PIE) Committee: Co-Chairs, Melanie Knapp and Jacqueline Izaguirre

    This committee provides public support for and makes recommendations for particular causes or policies that will benefit the deaf-blind community.

    Organizational Structure

    Based on a suggestion and support from the National Center on Deaf-Blindness, we have developed an Operations Manual to support NFADB management and processes. It includes existing policies and processes well as new ones that are being considered and developed. As such, it is a living document that will continue to be added to and edited for accuracy and clarity. Annual review of the manual and suggestions for edits and additions will be made by the board. By collecting and organizing this information, NFADB will be able to more efficiently manage itself as a volunteer organization with limited time and resources. It should also increase continuity over time through the board member transitions and other changes that all organizations encounter.

    How to Get Involved

    We are excited about the upcoming year and would like you to get involved with NFADB! We currently have a few vacant positions and are seeking interested individuals:

    • Editor for family stories posted on the NFADB website
    • Individuals to assist in developing a process for scholarships for families to attend state and national conferences
    • Individuals to assist in making NFADB resources accessible
    • NFADB ambassadors
    • NFADB historian 
    • NFADB podcasts editor and transcript creator

    In addition, we need members for the following committees: Adult Life, Affiliate, Development, Membership, Outreach, and PIE. If you are interested in one of the vacant positions and/or committee membership, please email me directly at patti@nfadb.org and include your name and the position or committee in which you are interested. If you are interested in more than one, that is fine! Please just rank your preference and we will include you where you are needed most.

    We are also always looking for members to become NFADB Ambassadors and provide training for individuals interested in this role. NFADB ambassadors serve as the faces and voices of our association. They build brand recognition and share our beliefs and mission. The purpose of the training is to help interested individuals feel comfortable promoting NFADB to a variety of audiences. It includes information on the following areas and can be offered on an as-needed basis:

    • NFADB outline: How to talk about NFADB
    • NFADB PowerPoint slide presentation
    • NFADB brochure
    • NFADB committee document

    This goal of the NFADB Ambassadors program is to increase awareness of NFADB, generate support for families, increase our membership, recruit volunteers, and identify potential family organizations to become NFADB affiliates.

    Activities Over the Past 6 Months at a Glance 

    • October 4–5, 2019: NFADB Full Board Face-to-Face Meeting at the Helen Keller National Center 
    • October 3, 2019: 3rd Annual Deaf-Blind Awareness Experiences Event, NY
    • September 27–29, 2019: Hosted an exhibit table at the Deaf-Blind Multi-handicapped Association ofTexas (DBMAT) Family Weekend, Texas
    • September 2019–May 2020: Facilitating Family-2-Family Communities Project Adult Life Group
    • August 2–5, 2019: Hosted an exhibit table at the 14th International CHARGE Syndrome Conference, Dallas, TX
    • July 13, 2019: Hosted an exhibit table at the 11th Annual Usher Syndrome Coalition USH Connections Conference, Philadelphia, PA 
    • July 11–14, 2019: NFADB Awareness Session at the Global Foundation for Peroxisomal Disorders (GFPD) Conference, Washington, DC
    • June 21–22, 2019: Co-hosted exhibit with State Affiliate, Pennsylvania Deaf-Blind Project Family Learning Weekend, PA
    • May 31–June 1, 2019: Hosted an exhibit table, Southern California 2019 Family Workshop, Long Beach, CA

    If you would like NFADB representation at your conference or other event that includes families with individuals who are deaf-blind, please contact us. We will do everything in our power to have a board member or NFADB Ambassador attend to bring awareness of NFADB to your function.

    Thank you for bearing through this long report. NFADB has been busy and I wanted to share all of our good work with our members. We are looking forward to an exciting year with NFADB and your involvement. We are grateful to our members and hope that with your help we can continue to advocate on behalf of families, foster family-to-family relationships, promote partnerships, and provide resources, information, and training opportunities for families.  

    Best Regards,

    Patti McGowan, NFADB President 

  • 01-Apr-2019 10:04 AM | Anonymous member (Administrator)

    Dear NFADB Members,  

    As I approach the end of my first six months as NFADB President, I am humbled by the trust you have placed in me and the good work of the presidents in whose footsteps I follow.  I thank all of you.

    I and our members are fortunate to have a high-powered and hard-working board.  Your NFADB Board of Directors, made up of 13 individuals—8 family volunteers, 1 professional volunteer, and 4 special advisors—continues to work tirelessly for the good of our association and is committed to NFADB’s mission.  Learn more about our board members on our website

    The past six months have been exceedingly busy. 

    • New members joined the Executive Committee and Board of Directors.  During these transitions we took some time for Board orientation and training on many topics, including our individual roles and responsibilities, NFADB’s legal responsibilities, and how to be effective NFADB ambassadors.
    • We are updating our branding and brochure and increasing our social media venues.
    • We reviewed our management processes and procedures and have begun to revise guidelines and policies and create an operation’s manual to support our work. 
    • We are in the process of transitioning to a new software program to support administrative activities, such as membership tracking, events, and training opportunities.  It will also house our upcoming redesigned website and provide new features for our members such as forums that foster family-to-family relationships.  We will announce its availability as soon as it goes live.  

    NFADB committees continue to be the lifeblood of our organization.  Several were formed at the specific request of members.  NFADB encourages and invites general members to become involved.  I know you will find committee work a rewarding experience and the committee chairs welcome your participation.  Find their contact information on the volunteer section of the NFADB website.  

    NFADB exists to empower the voices of families with individuals who are deaf-blind and advocate for their unique needs.  Since October 2018, we have represented NFADB at the:

    • New York Deafblind Collaborative Parent Day, Queens, NY, December 2018
    • Texas Deafblind Symposium, Austin, TX, February 2019

    We look forward to the following NFADB Ambassador and Exhibit Opportunities during the spring and summer:

    • SoCal Workshop Weekend for Families and Educators, Long Beach, CA, May 31-June 1, 2019
    • Pennsylvania Family Learning Conference, State College, PA, June 21-22,2019  
    • USH Connections Conference, Philadelphia, PA, July 13, 2019 
    • International CHARGE Syndrome Conference, Dallas, TX, August 2-5, 2019 

    Please save the date for our annual General Membership Meeting, which will be held online at 7:00 pm Eastern Time, July 9, 2019.  All general members are invited to attend.  More information will follow.

    Continue to celebrate NFADB’s 25th Anniversary year during 2019!  Originally started by and for families in 1994, NFADB has expanded to include any interested individuals, professionals, state family affiliate groups, organizations, and agencies who wish to empower the voices of families with individuals who are deaf-blind, regardless of age or ability.  We are in this deaf-blind community together! 

    Again, thank you for this opportunity to serve as your President.  Don’t hesitate to email (patti@nfadb.org) or call (724-864-2553) me with any NFADB concerns you may have. 


    Patti McGowan 
    National Family Association for Deaf-Blind 

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


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