Usher2020 Foundation

Bringing therapies into clinical trials for those losing vision due to Usher Syndrome and retinitis pigmentosa. #giveitup4sight @puddleofstew

[Odylia Therapeutics @OdyliaTx]

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 https://t.co/6IjvG9hdu9 and your social media platform of choice
#raredisease #nonprofitbiotech #innovate

[Usher2020 Foundation @usher_2020]

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 https://t.co/gDmGgsDZ1g via @YouTube

[Usher2020 Foundation @usher_2020]

A federal judge was refused a Lyft ride with his guide dog. He’s not alone. https://t.co/36fOhKp1F5

[Usher2020 Foundation @usher_2020]

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 https://t.co/8eTTVK99Us

[Usher2020 Foundation @usher_2020]

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 https://t.co/F73IBsGJcm

[Usher2020 Foundation @usher_2020]

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 https://t.co/hDu3IwpCiC

[Usher2020 Foundation @usher_2020]

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!

[Usher2020 Foundation @usher_2020]

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 https://t.co/aLSni0Bft0 via @Labiotech_eu

[Foundation Fighting Blindness @FightBlindness]

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

[Usher2020 Foundation @usher_2020]

@FB_Canada Is this the right link?

[Fighting Blindness Canada @FB_Canada]

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 https://t.co/eaknWXLjIz

#NacAttack #RetinitisPigmentosa #RP #ClinicalTrial

[Usher2020 Foundation @usher_2020]

Interesting.

[Michael F. Chiang, MD @NEIDirector]

Recent meta-analysis of mouse studies for wet #AMD:

Most research uses young male mice, despite the fact that AMD is an aging disease that affects slightly more women than men…

@BjJessing @AarhusUni_int

@ARVOiovs paper: https://t.co/xYkEvaGzGa

[Usher2020 Foundation @usher_2020]

Just never sure how to feel about this: A $3M gene therapy: Bluebird bio breaks its own pricing record with FDA approval of Skysona https://t.co/ir3ZybR9cr

[Usher Syndrome Coalition @UsherCoalition]

What is the USH Trust? A free, confidential, and secure place for everyone with #UsherSyndrome to connect and stay informed. Sign up here: https://t.co/A9jsRDlGbj

[Usher Syndrome Coalition @UsherCoalition]

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.

[Guide Dog Stew @puddleofstew]

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

[Usher2020 Foundation @usher_2020]

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

[Molly Burke @MollyBOfficial]

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!

[Usher2020 Foundation @usher_2020]

How a doctor helped a young patient with fatal disorder defy odds https://t.co/0cispk21Wi via @TodayShow

[Usher2020 Foundation @usher_2020]

A great story…and a great human being: How a doctor helped a young patient with fatal disorder defy odds https://t.co/0cispk2zLQ via @TodayShow