Usher2020 Foundation

Welcome to Odylia. We are doing things differently. We are taking a nonprofit approach to drug development for rare diseases. Interested in learning more? Visit us at odylia.org and your social media platform of choice #raredisease #nonprofitbiotech #innovate

If you are 18+, male, and Deaf, Hard of Hearing or DeafBlind, check out this video; casting for an incredible movie and not acting experience required: Flash Before the Bang Casting Call 2023 youtu.be/VjdrZ8OmQu4 via @YouTube

A federal judge was refused a Lyft ride with his guide dog. He’s not alone. washingtonpost.com/dc-md-va/2023/…

This is good news for late stage RP patients: Nanoscope's phase 2 win for gene therapy shows potential of light-sensitive approach to eye disease fiercebiotech.com/biotech/nanosc…

How do you put a value on someone’s ability to see? Would you be willing to pay $300,000 to keep your child from going blind? A million dollars? $3 million? ICER chief's agenda: Gene therapy differentiation, post-IRA model updates and more fiercepharma.com/pharma/icer-ch…

Just because it’s the end of January doesn’t mean it’s too late to set some goals for the year. It’s never too late to change for the better. #GiveItUp4Sight #NeverLoseSight instagram.com/p/CoDYPS1uH9r/…

There are so many people, behind the scenes, working hard to help those with Usher syndrome and other rare retinal diseases find treatments. We don’t always get a chance to say ‘thank you’. But when we do, we mean it!

This is exciting! Preserving central vision is crucial for those going blind due to Retinitis Pigmentosa: FDA clears SparingVision’s investigational new drug application to treat ocular diseases labiotech.eu/trends-news/fd… via @Labiotech_eu

Ya gotta do what ya gotta do! Now it's your turn - what do YOU do? #ShareYourVision

@FB_Canada Is this the right link?

Starting in 2023, a new clinical trial called NAC Attack will be launched to test an oral medication, N-acetylcysteine (NAC), as a potential therapy for retinitis pigmentosa (RP) patients. Learn more bit.ly/3SygP4o #NacAttack #RetinitisPigmentosa #RP #ClinicalTrial

Interesting.

Just never sure how to feel about this: A $3M gene therapy: Bluebird bio breaks its own pricing record with FDA approval of Skysona fiercepharma.com/pharma/3m-gene…

What is the USH Trust? A free, confidential, and secure place for everyone with #UsherSyndrome to connect and stay informed. Sign up here: usher-registry.org

Today is #UsherSyndromeAwarenessDay. We are grateful for our #USHFam which allows us to feel connected across the globe in raising awareness of Usher and shining light every day of the year.

On Capitol Hill this week raising awareness of Usher syndrome. Glad I was welcome! #UsherSyndromeAwareness #USHOnCapitolHill #TakeBackTheLight #USHDay2022

Went to Capitol Hill this week to raise awareness of Usher syndrome and change the way rare eye disease treatments are brought to patients. Thanks @UsherCoalition and those who traveled near and far to make some noise for those with Usher syndrome #USHDay2022 #TakeBackTheLight

It's estimated that less than 10% of blind people use a mobility aid to navigate and/or identify themselves as blind/VI (cane or guide dog) so to my blind followers, what do you use? Remember sighted folks, you could be interacting with blind people daily and just not know it!

How a doctor helped a young patient with fatal disorder defy odds today.com/video/how-a-do… via @TodayShow

A great story…and a great human being: How a doctor helped a young patient with fatal disorder defy odds today.com/video/how-a-do… via @TodayShow