Usher syndrome

Community and Science Bolster Lives of Deaf-Blind in Acadiana

By Phyllis Baudoin Griffard of 64 Parishes Magazine

Advances in genetics provide new hope for Acadiana’s close-knit population of Usher’s syndrome carriers. By many estimates, Acadiana has the largest population of citizens with Usher syndrome in America and second largest in the world. Usher syndrome is a genetic form of deaf-blindness. This group of Cajuns has never heard a fiddle waltz or a word of French, and they are slowly losing their vision because of a genetic quirk that came here with the first Acadians in the 1700s.

Introducing the STAT Act

From Krista Vasi, Executive Director of the Usher Syndrome Coalition:

The Speeding Therapy Access Today (STAT) Act of 2021, H.R. 1730 / S. 670 was officially introduced earlier this week by Senators Amy Klobuchar (D-MN) and Roger Wicker (R-MS) in the Senate, and Representatives Gus Bilirakis (R-FL) and G.K. Butterfield (D-NC) in the House of Representatives.

This bipartisan legislation is a result of more than a year of collaborative effort by rare disease community partners and congressional leaders, working to identify opportunities to ensure that all rare disease communities receive access to safe and effective treatments and cures at the earliest moment possible.

Read more >

Living with Usher Syndrome, Wednesday, March 3, 6 PM

From Natasha Aymami, South Central Regional Representative of the Helen Keller National Center:

Hello All!

I wanted to share an upcoming webinar presented by one of our Louisiana DeafBlind Collaboration Team state partners, Megan Wimberly, next March 3rd Wednesday at 6pm, ‘Living with Usher Syndrome. This workshop will be provided by Megan Wimberly of the Louisiana School for the deaf. She will be sharing information about supporting children with Usher Syndrome at home and at school. 

The information provided will cover an overview of Usher Syndrome, growing up as a person with Usher Syndrome, how to work with children that have it, and support their socioemotional development. This presentation is appropriate for families and educators that work with children withe Usher Syndrome from birth to adulthood. For more information about the Family Workshop Series and accommodations, please go to this webpage: 

Zoom Meeting ID: 959 7530 1279
Password: s6ytaQ

Please share this webinar with the community.

About the Louisiana School for the Deaf

The mission of Louisiana School for the Deaf (LSD) is to maximize the whole person potential of each student. LSD is also committed to serve as an exemplary resource in the education of deaf and hard of hearing students by providing:

• ASL/English Bilingual-Bicultural services within a language-rich environment.
• Rigorous educational curriculum while maximizing vocational training and job earning potential within a variety of professions.
• Established programs to address the social, emotional, cultural, physical, and educational needs of every child within a safe environmen
• A culture of high academic expectations and opportunities for students to study with an educator; emphasizing instruction; teaching study skills, time management skills, and organizational skills.
• Support and training for students to develop a culture of self advocacy

About the Helen Keller National Center

Authorized by an Act of Congress in 1967, HKNC is the only organization of its kind—providing training and resources exclusively to people age 16 and over who have combined vision and hearing loss.

Students travel from across the country to our headquarters in Sands Point, New York, for on-campus training in assistive technology, vocational services, orientation and mobility, communication and independent living, and our regional offices bring HKNC resources to communities throughout the United States.

Our instructors are sensitive to the cultural differences between students with different levels of hearing and vision loss and varying educational backgrounds, providing individualized training and guidance to each student.

HKNC also is a leader in professional learning, “training the trainers” to work with the deaf-blind community.

HKNC is the national division of Helen Keller Services, which also includes Helen Keller Services for the Blind, a regional division serving the New York City/Long Island area.

About the Louisiana DeafBlind Project

The mission of the Louisiana Deafblind Project for Children & Youth is to provide technical assistance and information dissemination to Louisiana students with combined hearing and vision loss, their families, schools, service providers, school districts, and the Louisiana Department of Education.