Arkansas Empowering Families of Deafblindness (AEFDB)

AEFDB seeks to better understand dual sensory impairment and to advocate for the unique needs of each child. We intend to build bridges between families and their communities – educating those communities about deafblindness and to make changes in medical, educational, vocational, and political systems in order for our children to live as independently as possible with a high quality of life for those who are deafblind.

Website:  https://dsiarpc.wixsite.com/aefd

Ava’s Voice       

 Ava's Voice is committed to providing opportunities to families to make connections. The purpose of Ava’s Voice is to provide financial assistance to support these opportunities, to advance the understanding of hearing and/or vision loss through funding research, and to provide resources and education to the public about hearing loss, vision loss and deafblindness.

Visit their website: www.avasvoice.org 

Deaf-Blind Multihandicapped Association of Texas  (DBMAT)

DBMAT promotes and improves the quality of life for all Texans who are deafblind multihandicapped by supporting the establishment of educational, rehabilitative, vocational and independent living opportunities for individuals of all ages.

Website: www.dbmat-tx.org

Family Partners for the DeafBlind of Florida and the U.S. Virgin Islands (FPDB-FL/VI)

FPDB-FL/VI is a group of families that meet with the purpose to support, advocate, and facilitate connections among families in Florida and the U.S. Virgin Islands. FPDB-FL/VI believes with appropriate supports, families of individuals with DeafBlindness with the appropriate supports can build leadership skills to help their family member succeed in fulfilling their right to become an active member of society.

Contact them:  flvideafblindfamilies@gmail.com

Illinois Advocates for the Deafblind (IADB)

 IADB is a non-profit organization of parents, families, friends, and professionals dedicated to protecting the rights and advocating for the needs of all individuals with deafblindness.

Visit their Facebook page: https://www.facebook.com/groups/206378499391160/

Lane of Inquiry

This non profit organization began in 2020, during the COVID-19 pandemic - to more intentionally conduct research that could improve outcomes for children who are Deafblind AND to relate that research to Lane's experience as a parent.  

Website: https://www.laneofinquiry.org/about_lane_of_inquiry.html

The New York Parent Association for Deaf-Blind (NYPADB)

 NYPADB advocates for individuals with deafblindness and their families. NYPADB provides opportunities for families to interact, communicate, and share ideas, experiences, information, and resources, as well as facilitates family events (either local or regional), and offers workshops in collaboration with the New York DeafBlind Collaborative. NYPADB sponsors monthly support group conference calls in specific etiologies such as CHARGE Syndrome, and also has a presence through social media (Facebook group) giving families the chance to connect with each other in a confidential platform sharing information, resources, mentoring and everlasting bonds.

Visit their website:  www.nypadb.org

The Pennsylvania Partnership for the Deafblind (PPDB)

PPDB strives to:

• Establish & maintain a network to identify & help connect families with similar needs
• Develop & disseminate accurate, timely information & share resources
• Collaborate with other organizations & groups to ensure that the needs & concerns of persons who are deafblind are addressed
• Educate policymakers on issues involving the deafblind

Visit their website: www.papdb.org

Puerto Rico Deaf-Blind Parents Association

 The Puerto Rico Deaf-Blind Parents’ Association strives for the inclusion of people with deafblindness into our modern society as productive and self-sufficient individuals, within the extent of their particular circumstances.

La integracion de la persona con sordoceguera a nuestra sociedad moderna, como un ser productivo y autosufuciente deja acuerdo a sus circunstancias particulares. 

Texas Chargers

 Texas Chargers, Inc. encourages, educates, and enriches individuals and families living with CHARGE syndrome.  Texas Chargers is a group of Texas families, friends and professionals who are dedicated to helping children and young adults who live with CHARGE syndrome.  The primary function of our organization is to support the emotional and educational needs of the people with CHARGE syndrome and the families and professionals working with them, to provide them with a better quality of life.

Visit their website: http://texaschargers.org/ 

Utah Deaf-Blind Family Ties

 Utah Deaf-Blind Family Ties is a private Facebook Group for families that have a member with Deafblindness in Utah.  All members of the group have immediate family members with deafblindness and all members live in Utah. We meet once a year for our annual DeafBlind conference sponsored by Utah Schools for the Deaf and Blind.  This event is not planned by our group, but is attended by our group. We connect with each other on FB.  We share our successes and our trials.  We ask questions.  It is a safe place for us to turn.