named programs · 2 · from sources
What they call their work
Information and Referral Services
Provides information and referral resources to individuals who are deafblind and their families, supporting access to services and community connections.
National Advocacy
Promotes policies and services for the deafblind community at the national level, serving as a collective voice for families and individuals.
activities · 4 groups
What they do
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Deaf and Hard of Hearing Support Services 2 activities
- Connects families of individuals who are DeafBlind through peer networksFacilitates Family-to-Family Communities (F2FC) and maintains a Facebook community to connect families of individuals who are DeafBlind, enabling them to share experiences, resources, and support. The program is co-facilitated nationally and includes webinars, conference calls, and sponsored events.
- Provides information, referral, and resource distribution servicesOffers access to state-specific resources and distributes information via email, website, and social media to support individuals who are DeafBlind and their families. Includes sharing announcements for trainings, webinars, and conferences, as well as producing podcasts featuring families, individuals, and professionals.
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Disability Rights Advocacy & Self-Advocacy Empowerment 1 activity
- Advocates for national policies and legislative change for the DeafBlind communityDevelops and advances a national advocacy agenda in collaboration with family leaders and organizations, including annual Capitol Hill visits, advocacy chats, and position papers. Focuses on federal legislation such as the Alice Cogswell and Anne Macy Sullivan Act to improve educational services for children and youth with deafblindness.
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Membership Program Administration 1 activity
- Offers membership programs to families and organizationsProvides tiered membership packages including one-year, three-year, and lifetime options for individuals, families, and organizations. Membership is valid for up to four or seven members depending on the category and supports access to resources and community engagement.
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Community Capacity Building & Leadership Networks 1 activity
- Strengthens leadership and collaboration through affiliate network supportOperates a national Affiliate Network that strengthens partnerships, supports family leadership development, and organizes workgroups and collaborative initiatives for organizations serving DeafBlind individuals and their families.
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financials · form 990EZ · fy2023
revenue
Total revenue$42K
Contributions & grants$36K84%
Program service revenue$00%
Investment income$170%
Other revenue—
expenses
Total expenses$19K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out—
balance sheet
Total assets$213K
Cash—
Investments—
Liabilities—
Net assets$213K
5 years on record · 2019–2023 · YoY revenue +163.9%
leadership · form 990 part vii · fy2023
Who runs it
board members · 6
- EDGENIE BELLAH — BOARD MEMBER
- GORDON BOE — BOARD MEMBER
- JACQUELINE IZAGUIRRE — BOARD MEMBER
- KIMBERLY MORITZ — BOARD MEMBER
- LISSA ELKINS — BOARD MEMBER
- NANCY GIURATO — BOARD MEMBER
relationships · 33
Who they work with
- Arkansas Empowering Families with DeafBlindness Partner — Collaborated with NFADB in developing the national advocacy agenda for DeafBlind individuals.
- Arkansas Empowering Families with DeafBlindness Partner — NFADB affiliate organization in Arkansas focused on advocacy and community education for families of individuals who are DeafBlind.
- Ava’s Voice Partner — Collaborated with NFADB in developing the national advocacy agenda for DeafBlind individuals.
- Ava’s Voice Partner — NFADB affiliate organization that provides financial assistance, public education, and supports research on hearing and vision loss and deafblindness.
- CHARGE Syndrome Foundation Partner — Board member serves as State Liaison for Vermont, indicating an organizational connection.
- CHARGE Syndrome Foundation Partner — Collaborated with NFADB in developing the national advocacy agenda for DeafBlind individuals.
- Congress Government — Scheduled meetings with members of Congress as part of annual advocacy efforts.
- Deaf-Blind Multihandicapped Association of Texas Partner — NFADB affiliate organization in Texas that supports educational, vocational, and independent living opportunities for Texans who are deafblind and multihandicapped.
- DeafBlind Multihandicapped Association of Texas Partner — Collaborated with NFADB in developing the national advocacy agenda for DeafBlind individuals.
- Family Advocacy Coalition Educating (FACE) for DeafBlind Partner — Collaborative coalition through which family leaders continue advocacy efforts for DeafBlind adults.
- Family Partners for DeafBlind of Florida & US Virgin Island Partner — Collaborated with NFADB in developing the national advocacy agenda for DeafBlind individuals.
- Family Partners for the DeafBlind of Florida and the U.S. Virgin Islands Partner — NFADB affiliate organization that supports, advocates for, and facilitates connections among families of individuals who are DeafBlind in Florida and the U.S. Virgin Islands.
- Global Foundation for Peroxisomal Disorders Partner — Collaborated with NFADB in developing the national advocacy agenda for DeafBlind individuals.
- Helen Keller National Center Partner — Collaborates as a member of the DeafBlind National Community of Practice to enhance services for individuals who are DeafBlind.
- Illinois Advocates for the Deafblind Partner — NFADB affiliate organization in Illinois composed of families, friends, and professionals advocating for the rights and needs of individuals with deafblindness.
- Lane of Inquiry Partner — NFADB affiliate organization conducting research to improve outcomes for children who are DeafBlind, informed by parent experience.
- NFADB Affiliate Network Network — Collaborative network of affiliate organizations working with NFADB to influence policy and develop leadership.
- NFADB Board Network — Governing board of the organization responsible for leadership and oversight.
- National Center on Deaf-Blindness (NCDB) Partner — Recommends NCDB as a provider of technical assistance for state DeafBlind projects and families.
- National Center on DeafBlindness Partner — Collaborates with NFADB and State DeafBlind Projects to facilitate Family-to-Family Communities.
- National Center on Deafblindness Partner — Collaborates through a special advisor role focused on early identification, referral, and family engagement.
- National Coalition on Deafblindness Partner — Collaborates with NFADB to advocate for federal legislation related to the education of children and youth with deafblindness.
- New York Parent Association for the DeafBlind Partner — Collaborated with NFADB in developing the national advocacy agenda for DeafBlind individuals.
- PA Partnership for the DeafBlind Partner — Collaborated with NFADB in developing the national advocacy agenda for DeafBlind individuals.
- Puerto Rico Deaf-Blind Parents Association Partner — NFADB affiliate organization in Puerto Rico focused on promoting the inclusion and self-sufficiency of individuals with deafblindness.
- State DeafBlind Projects Partner — Collaborates with NFADB and the National Center on DeafBlindness to facilitate Family-to-Family Communities.
- Texas Chargers Partner — NFADB affiliate organization supporting families of individuals with CHARGE syndrome in Texas through emotional and educational support.
- Texas Chargers, Inc. Partner — Collaborated with NFADB in developing the national advocacy agenda for DeafBlind individuals.
- Texas DeafBlind Project Partner — Board members have served in leadership and coordination roles, and maintain ongoing engagement with the project.
- The New York Parent Association for Deaf-Blind Partner — NFADB affiliate organization in New York that provides family support, advocacy, workshops, and support groups for families of individuals who are DeafBlind.
+ 3 more
strategies · 5
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Coordinated Lifespan Transition Planningmethodology: coordinated_transition_planningBy aligning state-level adult support plans with education-based transition planning, the organization enables purposeful adult lives for DeafBlind individuals because seamless, coordinated systems prevent service fragmentation and ensure continuity of access and support into adulthood.
- Family-Led Advocacy and Systems Changemethodology: family_led_advocacyBy centering families with lived experience in leadership and advocacy roles, the organization produces systemic change in policy and service delivery because authentic family voice drives more responsive and effective reforms that reflect community needs.
- Networked Advocacy for National Policy Influencemethodology: networked_advocacyBy building a coordinated national network of family-led organizations, the organization amplifies advocacy impact and drives policy change because collective action strengthens leadership development, resource sharing, and political influence beyond what isolated groups can achieve.
- Policy Advocacy Through Definition and Awarenessmethodology: policy_definition_advocacyBy advocating for the inclusion of a specific legal and educational definition of DeafBlindness in federal policy (e.g., IDEA), the organization improves identification, funding, and service access because precise definitions enable accurate data collection and targeted resource allocation.
- Specialized Personnel as Critical Access Enablersmethodology: access_through_specialized_personnelBy ensuring access to Interveners, Support Service Providers/Co-Navigators, and DeafBlind interpreters within state and education plans, the organization enables full communication and environmental access for DeafBlind individuals because specialized one-to-one support is necessary to mediate compounded sensory deprivation.