National Family Association for DeafBlind

National Family Association for DeafBlind Empowering Success for Families of the DeafBlind Community
(13)

Thanks American Printing House for the Blind this sounds like a great webinar on tactical graphics
08/18/2024

Thanks American Printing House for the Blind this sounds like a great webinar on tactical graphics

Join the Access Academy on 8/22 from 2:00 to 3:30 pm (ET) to learn the ins and outs of using the APH Tactile Graphics Kit in a classroom setting. Craft along with us as we make aluminum tactile graphics together for math, social studies, and science worksheets!

Register today for this free webinar: https://bit.ly/4dMXG8H

NFADB shares:https://www.facebook.com/share/p/TGxhYYUbgSfdBkwW/
08/16/2024

NFADB shares:
https://www.facebook.com/share/p/TGxhYYUbgSfdBkwW/

The National Intervener & Advocate Association is sponsoring two consecutive Haptics trainings on Zoom. While we understand the optimal way to learn is in person, this online training can be accessed anywhere. You will learn the basics of Haptic Communication and explore how it can be effectively integrated into your daily interactions with your student who is deafblind. More information to follow.

Save the dates:
September 17 & October 8
6:30 Eastern
5:30 Central
4:30 Mountain
3:30 Pacific

08/15/2024

Transitioning to adulthood is complex, especially for a child deafblind. You've advocated for your child's needs; now, new challenges arise.

Some good back to school information from FamilyConnect
08/15/2024

Some good back to school information from FamilyConnect

Prepare for a successful school year for children who are blind or low vision. Explore tips and ideas to discuss with your child's IEP team.

NFADB shares:
08/15/2024

NFADB shares:

New Release! Season 2, Episode 7: Transitioning to College with a Disability

The Exceptional Experience Podcast is very timely this week as many students are headed off to college. Join Billie and Mayia as they talk about this transition as a student with a disability.

Listen here: https://ow.ly/bFgU50SVMUT

NFADB shares:
08/11/2024

NFADB shares:

Discover tips and strategies for incorporating active learning into your travel plans. Keep your child engaged and learning during car rides, train journeys, and flights.

NFADB shares:https://www.facebook.com/share/p/VqmNH3gyYG6hzRxA/?
08/10/2024

NFADB shares:

https://www.facebook.com/share/p/VqmNH3gyYG6hzRxA/?

Join the Access Academy on 8/15 from 2:00 to 3:30 PM (ET) to learn all about Determining the Instructional Purpose of Tactile Graphics! Discover how to use a planning and organizational document to design meaningful tactile graphics, create viable tactile graphic solutions, and so much more!

Learn more and register for this free webinar: https://bit.ly/4ceH6gY

We have two more webinars about tactile graphics coming up this month, so be sure to check those out, too: https://bit.ly/38NAiw5

08/08/2024

NFADB Shares & Celebrates CHARGE Syndrome Awareness Day 8/8/24

From The CHARGE Syndrome Foundation...

CHARGE Syndrome Awareness Day

The first CHARGE Syndrome Awareness Day will be held internationally on August 8th. This marks the day the first paper on the discovery of the CHD7 gene was published by Professor Conny van Ravenswaaij-Arts (August 8, 2004). This day aims to raise awareness of the variability of CHARGE syndrome to help improve diagnosis and access to best practice interventions.

CHARGE Syndrome Awareness Day 2024
This year’s theme is CHARGE: How do you spell it? The goal is to present the word ‘CHARGE’ in a variety of ways to show the variability of CHARGE syndrome.

Here are some ways that you can participate using this year’s theme:

• Spell the word CHARGE by using a variety of materials or methods. Use Lego bricks or Scrabble tiles; get some friends to form human letters; write it in the sand or even in the sky; fingerspell it or fingerpaint it; crochet it or knit it; bake the letters or write them on a cake; or have CHARGE lit up in lights or hoisted up a flagpole.
• Be creative! Take a photo of your creation and share it on social media to show how different CHARGE can look around the world.
• Use the following hashtags when sharing your story on social media:
• Follow the CHARGE Syndrome Awareness Day page: CHARGE-Syndrome Awareness Day.
• Join the CHARGE Syndrome Awareness Facebook Group: CHARGE-Syndrome Awareness Day – International Group
• Show your support by wearing CHARGE syndrome apparel. Click here to shop our Awareness Store.

Join us on August 8, 2024 to raise awareness of CHARGE syndrome around the world!

From Deafblind International...
From DbI:

About CHARGE Syndrome

CHARGE syndrome is a rare (1:10,000), complex genetic disorder causing multiple birth defects and sensory deficits. It presents in a variety of ways with a wide spectrum of medical, physical, and psychological issues. Nearly all have dual sensory loss (80-95% are deafblind) and vestibular dysfunction (missing semi-circular canals) affecting balance and processing of both visual and auditory information, dramatically interfering with development of motor skills, communication, and language milestones.

The clinical diagnostic criteria C-H-A-R-G-E was first described in 1981 but is no longer used for diagnosis. The criteria has undergone several changes since then (1998, 2005, 2016) to include an expanded list of major and minor features for clinical diagnosis. While the variant in CHD7 gene was discovered in 2004, a diagnosis of CHARGE syndrome remains clinical with genetic testing being used in borderline cases. However, due to the variability of how CHARGE syndrome presents there can be delays in diagnosis and appropriate interventions.

NFADB shares:https://m.facebook.com/story.php?story_fbid=911527601021775&id=100064936292137
08/07/2024

NFADB shares:

https://m.facebook.com/story.php?story_fbid=911527601021775&id=100064936292137

"Even when schools are aware of students’ accessibility needs, they often lack the knowledge, training, and services to follow through. This often leads to a delay in disabled students or parents getting needed materials."

A new USU program will help students with disabilities across the nation access the materials they need to succeed in school.

https://www.upr.org/utah-news/2024-06-26/usu-program-school-materials-accessible-disabled-students

NFADB shares:
08/06/2024

NFADB shares:

Helen Keller National Center has appointed John Filek (M.Ed.) as its new HKNC Executive Director, effective July 22, 2024.

08/03/2024

NFADB shares:

Family-to-Family Communities (F2FC) phase 10 registration is now open! Registration is open until September 1, 2024. You...
08/02/2024

Family-to-Family Communities (F2FC) phase 10 registration is now open! Registration is open until September 1, 2024. You can register by scanning the QR code on the flyer.

Facilitators will contact participants in August. Monthly meetings will be Sept 2024 - May 2025.

There are several groups for English-speaking families, one for Spanish-speaking families, and are forming a new group just for fathers. Feel free to share with other families with children and adults who are deafblind! You can find more information and updates on their page. https://www.facebook.com/profile.php?id=100069610141528

F2FC ofrece una forma única para que las familias de personas con sordo-ceguera se conecten, compartan información y recursos, se ofrezcan apoyo mutuo. F2FC está abierto a todas las familias de personas con sordo-ceguera, independientemente de la edad o el diagnóstico de su familiar. Las reuniones serán de septiembre de 2024 a mayo de 2025 el primer martes de cada mes, a las 12:00 p.m. hora del este por 90 minutos Las reuniones serán en Zoom y/o por teléfono : Lostenas son eaedos pore upoe incuyentemas renerales sabre discapacdad, ea sordoceguera y sus intersecciones y otros temas como atención médica, educación, relaciones familiares, autocuidado, liderazgo familiar, y otros Una madre dijo, “al estar conectado con otras familias especiales, me doy cuenta de ue no estamos solos y que nos apoyamos mutuamente.”

Image Description: lime green background. NFADB logo on the top left. There is a center image on a black and a white box with two open palms with stick figure of rainbow colored paper family of two adults and two children holding hands. Text reads - Registration for F2FC is now open. There is a QR code for registration on the bottom right.

NFADB is proud to posthumously recognize Mary O’Donnell, past NFADB President, as the recipient of the 2024 Steve Perrea...
08/01/2024

NFADB is proud to posthumously recognize Mary O’Donnell, past NFADB President, as the recipient of the 2024 Steve Perreault Award.

During the 2024 NFADB Annual General Membership meeting, Nancy O’Donnell reflected on the beginnings of NFADB and shared:

“Mary O’Donnell was one of the original 12 parents of this National Parent Network Advisory Committee. It didn’t take long for everyone to realize that parents needed to do more than advise. They needed to advocate, to lobby, to educate beyond the educational years. Leadership needed to shift from professionals to parents and siblings. A 501(c)(3) needed to be established. The early organizational meetings were a hoot. I say that with great love and affection, as I was a front-row witness to this evolution. I got to work with Joe (McNulty), Steve (Perreault), Mary, and other parents as they shepherded this new group from an advisory committee into a national nonprofit.”

Mary O’Donnell served as NFADB President after NFADB became a non-profit organization in 1994, leaving a lasting legacy through her dedicated leadership. Although she is no longer with us, her commitment and passion continue to inspire and empower the success of families in the DeafBlind community through her family and NFADB.

ID: white background, center light green circle. top left corner NFADB logo, top right text reads The Steve Perreault Award 2024 Family Award Posthumous Award winner. Below black text reads Mary O'Donnell. Below image of black and white photo of woman with short hair, glasses, dark jacket, in front of microphone. Black text reads Mary’s career in the DeafBlind community spanned more than thirty years where she served on numerous advisory committees at the state and national level. Like Steve...Mary was awarded the prestigious Anne Sullivan Medal, the first parent to receive this award. She had no personal agenda other than to improve services for all.”

With great sadness NFADB shares:
07/30/2024

With great sadness NFADB shares:

Many of you had the privilege of knowing her. It is with great sadness and great appreciation for all her wonderful work that we inform you that Barbara McLetchie has passed away. Here she wrote about her DbI journey, emphasizing the fundamental importance of relationships in our work: https://www.deafblindinternational.org/get-involved/ Such relationships are sure to be warmly remembered. We are deeply grateful for all her relational strength, creativity, competence and warmth.

NFADB sharesCongratulations Amy and Beth!
07/29/2024

NFADB shares
Congratulations Amy and Beth!

NFADB shares:
07/27/2024

NFADB shares:

After a bit of a dry spell, yesterday we picked up our 54th Cogswell-Macy co-sponsor in the House. Thanks to Rep. Jill Tokuda (D-Hawaii) for her leadership. She represents Hawaii's 2nd District, which is most of the state with the exception of Honolulu. Let's keep this moving forward!

07/27/2024

NFADB shares:

NFADB shares:
07/24/2024

NFADB shares:

07/22/2024

NFADB Shares:

Registration is now open for Sensing Connections, two peer-to-peer support programs that offer family members an opportunity to process their grief due to the death of their loved one and learn coping strategies that have helped others. The first session meets weekly on Wednesday evenings from September 18 to February 26. Enrollment is free. Grief Support for Families of Children with Deaf-Blindness Registration (surveygizmo.com)

Great info from APH Family connect.
07/21/2024

Great info from APH Family connect.

O&M skills are crucial for blind or low-vision individuals to navigate safely. They work with O&M specialists from infancy through adulthood.

NFADB shares:
07/16/2024

NFADB shares:

Are you an older adult aged 55 and up facing combined hearing and vision loss?

Join Helen Keller National Center for a weeklong workshop designed just for you!

HKNC’s Older Adult Program
WHEN: September 23rd - 28th, 2024
WHERE: Helen Keller National Center
141 Middle Neck Rd, Sands Point, NY 11050

Topics Include:
Information About Hearing & Vision Loss, Communication, Self-Advocacy & Coping Skills, Technology & Independent Living, Orientation & Mobility, Emergency Preparedness, Leisure Activities & Social Interaction, and many more!

COST:
Tuition: $825
Room & Board: $525
Total: $1,350

For registration and more info, contact: Jenee Alleman, HKNC's Older Adult Specialist
[email protected]

Spaces are limited! Don't miss out on this opportunity.
Register by July 30th to secure your spot.

Funding Options:
Individuals who qualify as legally blind can seek sponsorship through their state's Older Individuals who are Blind (OIB) funds. Participants may still be responsible for covering their travel expenses to/from HKNC. Self-pay is an option as well.

Individuals who are experiencing some degree of vision loss (this can range from a progressive vision loss, macular degeneration, cataracts, glaucoma, etc.) that has a significant impact on their daily functioning but do not qualify as legally blind, may self-pay. All individuals must also experience some degree of hearing loss and be oral communicators.

Ready to enhance your independence and quality of life? Register today.

Image Description:
Graphic flyer for HKNC Older Adult Program. The blue and white graphic featuring an older adult communicating in tactile sign language contains abridged detailed information listed in this post.

07/16/2024

NFADB shares:

NFADB Shares
07/10/2024

NFADB Shares

Jessica Minneci, APH’s Communications Associate, composes blogs during work and spends her nights drafting novels. One-line braille displays assist with...

NFADB wishes everyone a Very Happy 4th of July! Image Description: Transparent black background with an image of the Ame...
07/05/2024

NFADB wishes everyone a Very Happy 4th of July!

Image Description: Transparent black background with an image of the American flag, text reads Happy 4th of July, NFADB logo on top left.

07/01/2024

ECC prioritizes orientation and mobility (O&M) for the visually impaired, fostering spatial understanding and safe independent travel.

Address

141 Middle Neck Road
Sands Point, NY
11050

Alerts

Be the first to know and let us send you an email when National Family Association for DeafBlind posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to National Family Association for DeafBlind:

Videos

Share

Nearby clinics


Other Sands Point clinics

Show All