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Grant Activity
10
GRANTS COMMITED & PAID
$338,393
Total funds committed & paid
3
ORGANIZATIONS BENEFITTED FROM USH ONE SEE
10
YEARS USH ONE SEE HAS BEEN TRANSFORMING THE FUTURE FOR USHER PATIENTS
THE DETAILS
December
2016
$30,000 - LSU Health Sciences Center
Natural history and molecular epidemiology of Usher syndrome in Louisiana: The goals of this donation are to support and expand the number of participants in the Usher syndrome natural history and genetic testing studies at LSUHSC in Dr. Lentz’ laboratory.
May
2018
$25,000 - LSU Health Sciences Center
Antisense therapy for Usher syndrome type 1C:
The goals of this donation are to support activities related to the development of antisense oligonucleotides as a therapeutic drug for USH1C patients in Dr. Lentz’s laboratory at LSUHSC.
July
2019
$40,000 - LSU Health Sciences Center
Natural history of visual loss in USH1C: The goals of this donation are to support activities related to the clinical evaluation of vision in USH1C patients at the LSU Eye Center in New Orleans, Louisiana, as part of the natural history studies at LSUHSC in Dr. Lentz’ laboratory.
September
2019
$2,500 - Usher Syndrome Coalition
The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common genetic cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.
June
2020
$75,000 - Usher 2020
Support Gene Therapy
September
2022
$15,000 - LSU Health Sciences Center
The goals of this donation are to provide supplemental funding to improve patient access to the NIH-R01 funded prospective USH1C Natural History Study by providing deaf-blind interpreters and a hotel stay for study participants during clinical visits at participating sites.
September
2023
$2,500 - Usher Syndrome Coalition
The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common genetic cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.
July - June
2024 - 2026
$72,705.95 - LSU Health Sciences Center
Natural history of visual loss in USH1C: MEH site
The goal of this donation is to increase the number of participants in the ongoing Prospective Natural History of Visual Loss in USH1C: a multi-center study by adding an additional clinical site at Moorfield’s Eye Hospital (MEH) in London, UK.
April - February
2025 - 2026
$57,500 - LSU Health Sciences Center
Antisense Therapy for Acadian USH1C: clinical trial preparation (pre-IND meeting with FDA)
The goals of this donation is to support external consulting services from IND Directions, LLC. to review the research in Dr. Lentz’s laboratory at LSUHSC towards the discovery and development of a novel antisense therapy for USH1C; and to develop regulatory documents for a pre-IND meeting with the FDA.
June
2025
$3,000 - Ava's Voice
USHThis Summer Camp for Kids with Usher Syndrome: Ush One See was able to apply for a grant through the Stuller Family Foundation & collectively send 4 South Louisiana kids to USHThis Summer Camp. The mission of Ava’s Voice is to empower youth with Usher syndrome and to educate families and school communities.
May
2026
$11,000 - Ava's Voice
USHThis Summer Camp for Kids with Usher Syndrome: Ush One See was able to apply for a grant through the Stuller Family Foundation & collectively send 7 South Louisiana kids to USHThis Summer Camp. The mission of Ava’s Voice is to empower youth with Usher syndrome and to educate families and school communities.
June
2026
$1,687.50 - LSU Health Sciences Center
Antisense Therapy for Acadian USH1C: clinical trial preparation (NIH grant application)
The goal of this donation is to support consulting services from IND Directions, LLC. for the development of an NIH grant to prepare for a clinical trial to test a novel antisense therapy for Acadian USH1C.
October
2026
$2,500 - Usher Syndrome Coalition
The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common genetic cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.
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