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The Spring Report from the President

20-Mar-2023 5:00 AM | Jacqueline (Administrator)

Spring 2023

Hello NFADB Members!

Happy Spring to you and your family. On behalf of the National Family Association for Deaf-Blind (NFADB), we thank you for your ongoing support and engagement. Spring is certainly in the air, the season during which the natural world revives and reinvigorates after the cold winter months. This is the reality of NFADB, not only following winter but also what seems like a renewal and awakening after several years of Covid.

NFADB board members have just returned from two in-person events. It was so wonderful to see families and our deafblind community once again! It was the rejuvenation we have been looking forward to for so long.

At the end of February, we attended the 2023 Texas Symposium on Deafblind Education in Austin, where we joined families and professionals from Texas and across the country. NFADB was an exhibitor, and the co-leads of our Policy, Information, and Education (PIE) Committee, Jacqueline Izaguirre and Melanie Knapp, gave a presentation called “Stronger Together: One Family Voice.” It covered details of NFADB’s exciting advocacy training for families and the new National Advocacy Agenda developed by eleven family organizations in 2021 following the training pilot program. They also spoke about a newly formed coalition, Family Advocacy Coalition Educating (FACE) for Deaf-Blind, and the plans for the first “Day on the Hill for Deaf-Blind” scheduled for April 19. I had the honor of sharing updates on national issues and resources in deafblind education as part of a “state of the nation” address. As always, the Texas Deafblind Outreach team knocked it out of the park with their Symposium on Deafblind Education

Following the Texas Symposium, NFADB attended the 2023 Deaf-Blind Summit: “Reset, Rebuild, Recharge” in Cincinnati, Ohio. This annual event, is put on by the National Center on Deaf-Blindness for state deaf-blind project personnel funded by the U.S. Department of Education's Office of Special Education Programs. This was a wonderful opportunity for NFADB to present an overview of our association for new state deafblind project staff and share the “Stronger Together: One Family Voice presentation. NFADB exists to empower the voices of families with individuals who are deafblind and advocate for their unique needs. Our partnership with our state deafblind projects is crucial to this mission to ensure that families in their states are connected to the knowledge and skills needed to navigate services for their child and to connect them to other families in the deafblind community.

The following are updates from NFADB’s advisory board committees and work groups. Remember any general member can join and volunteer for these groups. We need you!

Adult Life Committee. Our Adult Life Committee continues to work on the need for information, resources, and support related to adult life issues for our families with adult children. The next committee meeting will be held on April 17. Feel free to contact me, patti@nfadb.org, for more information.

Affiliate Network. On February 7, the NFADB Affiliate Network convened to hear about the achievements of each of the Affiliate organizations and activities in their respective family organizations. NFADB currently has 13 Affiliates and is looking to expand. For more information, contact Myrna Medina (myrna@nfadb.org). The next meeting, scheduled for May 2, will be about strategic planning.

Outreach Committee. The Outreach Committee is excited to welcome new committee members: Ricky Teed, Alexis Ramirez, and Kimberly Moritz. NFADB celebrated Rare Disease Day on February 28 with our annual High 5 NFADB Campaign. Thank you to everyone who participated and sent us a High 5! 

The 2023 Steve Perrault Award will honor a family member of an individual who is deafblind who has shown outstanding service, advocacy, empowerment, or leadership. The award will be presented at NFADB's Annual General Membership meeting on July 11, 2023. All NFADB members are invited to attend the meeting, so save the date!! 

The Outreach Committee is responsible for NFADB’s social media. For exciting updates and information, follow us on Instagram (@nfadb), Facebook, and Twitter (@nfadb). If you are interested in joining the Outreach Committee, contact Nilam Agrawal (nilam@nfadb.org) and Donia Shirley (donia@nfadb.org). The next meeting will be held on March 20.

Policy, Information, and Education Committee. Our PIE Committee has also been very busy. As noted above, they recently presented at two conferences and are getting ready to lead our first “Day on the Hill” for and with families with loved ones who are deafblind on April 19. They have also completed the second year of NFADB’s Family Advocacy Training and Education (FATE) project and formed the Family Advocacy Coalition Educating (FACE) for Deaf-Blind. 

The PIE committee has also established two advocacy discussion forums on the NFADB website. One on Specific Learning Disability (SLD) Identification facilitated by board member Nilam Agrawal and one on Qualifications of Interveners facilitated by board member Ricky Teed. Learn more about these and other activities on the NFADB website Advocacy page. To become involved with the PIE Committee, FATE, or FACE, contact Melanie Knapp (melanie@nfadb.org) and Jacqueline Izaguirre (jacqueline@nfadb.org).

In closing, I must share how grateful I am to our volunteer working board, special advisors, and our members at large. It is time now to Spring into Action! Please join us, as we truly are stronger together as one family voice!

With gratitude,

Patti McGowan, NFADB President


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

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