Louisiana

The USH Trust is the largest international contact database of individuals with Usher syndrome. Created and maintained by the Usher Syndrome Coalition, it is our most powerful tool to connect and inform individuals living with Usher worldwide. The USH Trust allows us to get to know and serve the community better, and to do what we do best: identify, build, support, and connect the community, both within the Usher community and with the research community. We do this via email, telephone, videophone, social media, webinars, local social events, our USH Connections Conference, and the many resources on our website. Come, join us!

Individuals with Usher syndrome who are passionate about research have a new data collection platform to join. The Usher Syndrome Data Collection Platform, or USH DCP, is hosted by RARE-X, a nonprofit dedicated to accelerating research. By entering your health information into this secure platform, you will become part of a global database of de-identified information available to researchers worldwide. That means that only you can see your data. Only you can change your data. Your personal information (name, date of birth, address, etc.) will not be shared without your permission. As the DCP grows, more researchers will become aware of Usher syndrome. This can lead to the development of clinical trials, new treatments, and new therapies. YOU hold the key to unlocking future research discoveries.

Program and services for youth and adults with combined vision and hearing loss.

Provides free telecommunication evaluation, equipment, and training to children and adults with significant vision and hearing loss who qualify. iCanConnect is a national program authorized under the National Deaf-Blind Equipment Distribution Program.

Builds capacity of state and local agencies, parents, and professionals to improve services and outcomes for children and young adults who are deaf-blind and their families by providing innovative technical assistance, information, and training.

A national volunteer organization created to empower the voices of families of individuals who are deaf-blind and to advocate for their unique needs.

The Quiet Cajuns is a short documentary film about DeafBlind Americans in Southwest Louisiana, which is home to the largest population of people with Usher Syndrome because of a genetic quirk that came with the first Acadian settlers from Nova Scotia. The Deaf/Blind culture is unique but undergoing tremendous change, in part due to medical advances.

The Quiet Cajuns is a short documentary film about DeafBlind Americans in Southwest Louisiana, which is home to the largest population of people with Usher syndrome because of a genetic quirk that came with the first Acadian settlers from Nova Scotia. The DeafBlind culture is unique but undergoing tremendous change, in part due to medical advances.

Conni Castille and Phyllis Griffard talk about Acadian Usher syndrome, common in the Acadiana area of Southwest Louisiana.

This is the transcript of the podcast of the same name. Conni Castille and Phyllis Griffard talk about Acadian Usher syndrome, common in Acadiana Southwest Louisiana.

Advances in genetics provide new hope for Acadiana’s close-knit population of Usher's syndrome carriers
BY PHYLLIS BAUDOIN GRIFFARD

Danny Delcambre, the first Deaf-Blind founder and operator of a Seattle restaurant, gave an inspirational speech on his accomplishments.

Article from Deaf-Blind Perspectives, 2000

Brought over from France in the years after 1632 to colonize what was then the French territory of Acadie, the Acadians were the first European settlers in Nova Scotia. This land mass included modern-day peninsular Nova Scotia, New Brunswick and Prince Edward Island.

The Louisiana Commission for the Deaf (LCD) Hearing Aid Program provides hearing aids to eligible individuals at no cost.

The Louisiana Commission for the Deaf (LCD) provides SSP services to Louisiana residents who are DeafBlind as defined by US legislature. Eligible participants will have:
Central visual acuity of 20/200 or less in their better eye with corrective lenses or a visual field defect.
Chronic hearing loss so severe that most speech cannot be understood. Extreme difficulty in doing daily life activities, participating in social activities, or getting a job on their own.
If an individual cannot have their hearing and vision properly measured, but they have severe hearing and visual disabilities that make it extremely difficult to be independent, they may still be eligible for the program.

Who are the Acadians? Acadians are the descendants of a group of French-speaking settlers who migrated from coastal France in the late sixteenth century to establish a French colony called Acadia in the maritime provinces of Canada and part of what is now the state of Maine. Forced out by the British in the mid-sixteenth century, a few settlers remained in Maine, but most resettled in southern Louisiana and are popularly known as Cajuns.

Acadiana is a 22-parish region settled in the mid-18th century by exiles from present-day Nova Scotia. About 3,000 Acadians arrived in South Louisiana from 1764 to around 1785, and now, more than 250 years later, their creolized name, Cajun (derived from the French Acadien), is widely recognized. Learn about this fascinating culture.

A link between Usher syndrome and the Acadians of Louisiana was initially established more than 40 years ago. Usher syndrome occurs more frequently in Acadians than it does in the rest of the United States' population or in the world. Read about the Talbots - one of the original Acadian families in Louisiana.

Presented by Megan Wimberly

Presented by Megan Wimberly