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.
Strong leadership influences change in systems like Healthcare, Education, and Public Policy. To become a better informed professional, you need interdisciplinary skills and community-based learning. To transform society as we know it, you must be an effective advocate and leader.
Apply to Louisiana LEND now to acquire these skills! Deadline extended to May 31st, 2021! Click the button below that best describes you.
Please know that LEND is a stipend program that financially compensates you for your time and participation. Registration and travel to the national AUCD conference in Washington, D.C. is also covered when participating in the program.
Each March, we join the National Association of Councils on Developmental Disabilities (NACCD) to highlight the many ways in which people with and without disabilities come together to form strong, diverse communities. This social media campaign, known as “Developmental Disabilities Awareness Month” or #DDawareness2021, seeks to raise awareness about the inclusion of people with developmental disabilities, as well as awareness of the barriers that people with disabilities still face in connecting to the communities in which they live.
Each March, we join the National Association of Councils on Developmental Disabilities (NACCD) to highlight the many ways in which people with and without disabilities come together to form strong, diverse communities. This social media campaign, known as “Developmental Disabilities Awareness Month” or #DDawareness2021, seeks to raise awareness about the inclusion of people with developmental disabilities, as well as awareness of the barriers that people with disabilities still face in connecting to the communities in which they live.
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.
“To help families build a solid foundation, we must give them the tools and resources to build. That is what we do with the Early Head Start Child Care Partnership at the LSUHSC Human Development Center.”
From Carole Berke, Vocational/Transitional Counselor at Families Helping Families NOLA:
Families Helping Families (FHF) NOLA seeks a part-time (20 hours) 1099 employee to provide employments specialist supports and services to transition age students participating in FHF’s Coding for Youth With Autism program. This position involves assisting individuals in the acquisition of the employment and community living skills necessary to obtain employment and independently maintain employment in the community in the Technology Field. These supports are individualized and centered around work-related goals focused on helping the FHF coding students obtain the maximum level of independence within their job and tech career pathway. Employment Specialists provide the supports necessary to ensure success at future employment sites. Services will be provided at a variety of sites including; FHF NOLA, at FHF’s educational partner for coding, Operation Spark, or in the community. Applicants should have a Bachelor’s degree and at least one year of experience delivering supported employment services or direct care services either in classroom, place of employment, day care, medical, or residential settings. Once additional funding is obtained the position will become full time salaried employment. For further information send a resume and cover letter to Carole Berke, Development Officer, FHF NOLA. The email address is carole@caroleberkeassociates.com. Please put Employment Specialist in the subject line
From David Goldfield, Blindness Assistive Technology Specialist:
The National Research and Training Center on Blindness and Low Vision at Mississippi State University (NRTC) is recruiting people with blindness or low vision (age 21+) who are working or are interested in working to be part of a multi-year study about technology in the workplace. Participants will complete multiple surveys over time so they can learn about changes in access technology use. Participants will receive a small gift card after completing each survey. The NRTC will share our findings with you and their technology company partners. They’ll also make recommendations for access technology users, VR professionals, access technology specialists, and employers. Would you like to help with their 5-year study? Complete their pre-screening survey or call 662-325-2001 to schedule an appointment for a telephone screening.
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