Tänään on harvinaisten sairauksien päivä  

#UsherinOireyhtyma #UsherSyndrome

Hey Krista! Thanks for Joining us on The Blind Chick. Can't wait to have you back!

#TheBlindChick #UsherSyndrome #Aftersight

Giving voice to the ‘quiet Cajuns’

A new documentary spotlights the endurance and adaptability of Cajuns with genetic deaf-blindness.

https://thecurrentla.com/2025/giving-voice-to-the-quiet-cajuns/

Usher Syndrome Awareness Day — 20 Sept 2025. A rare genetic condition causing hearing loss + progressive vision loss. Early diagnosis, rehabilitation and informed care make a difference. Share to raise awareness. #UsherSyndrome #UsherAwarenessDay #RareDisease #RetinitisPigmentosa #HearingLoss #LowVision #GeneticTesting #CochlearImplant #VisionRehab #GeneTherapy #VitaminA #SCABPharmacy

Jahas. Kaaduin sitten asfalttiin. En nähnyt portaita ja kävelin ns. tyhjään.

Perus usherin arki.

#RetinitisPigmentosa #kuurosokea #deafblind #UsherSyndrome

Näkökykyni on muuttunut 15 vuoden aikana ja sen huomaan kyllä itsestäni, kun aloin muistelemaan mitä kirjoja luin silloin fyysisenä kirjana.

Nälkäpeli kirjasarja on yksí tällainen.

Viidennen kirjan luen digitaalisessa muodossa.

#RetinitisPigmentosa #nakovamma #UsherinOireyhtyma #UsherSyndrome #deafblind #kuurosokea #kirjat #lukeminen

(Boosts appreciated!)

Hi friends! If you know me - you know that I don’t like to ask for help (or directions, or advice … :-) ). Once a year, on #GivingTuesday , I’ll put out the call to help fund this amazing organization - The Usher 1F Collaborative - a non-profit that has funded $14M+ of real scientific work. #UsherSyndrome causes #deaf-ness and progressive #blind-ness, and has been a central part of our family’s life for 25 years. We firmly believe that mainline, peer-reviewed, hard-core science will effectively treat blindness soon.

https://www.usher1f.org/giving-tuesday/giving-tuesday-2024.html

(See research summaries here: https://www.usher1f.org/the-research/)

Please join me in making a contribution — tax deductible in the US and Canada.

Giving Tuesday 2024 : Giving Tuesday : Usher 1F Collaborative

Canadian parents know their kids will go blind, maybe deaf. They’re making lasting memories now
Hanna Love says she and her husband are focused on giving their young kids as many memories as possible before they go blind and possibly completely deaf.
#globalnews #Health #Blind #Deaf #UsherSyndrome
https://globalnews.ca/news/10803601/usher-syndrome-kids-blindness-deaf-treatment/
Canadian parents know their kids will go blind, maybe deaf. They’re making lasting memories now

Hanna Love says she and her husband are focused on giving their young kids as many memories as possible before they go blind and possibly completely deaf.

Global News
Canadian parents know their kids will go blind, maybe deaf. They’re making lasting memories now
Hanna Love says she and her husband are focused on giving their young kids as many memories as possible before they go blind and possibly completely deaf.
#globalnews #Health #Blind #Deaf #UsherSyndrome
https://globalnews.ca/news/10803601/usher-syndrome-kids-blindness-deaf-treatment/
Canadian parents know their kids will go blind, maybe deaf. They’re making lasting memories now

Hanna Love says she and her husband are focused on giving their young kids as many memories as possible before they go blind and possibly completely deaf.

Global News
Canadian parents know their kids will go blind, maybe deaf. They’re making lasting memories now
Hanna Love says she and her husband are focused on giving their young kids as many memories as possible before they go blind and possibly completely deaf.
#globalnews #Health #Blind #Deaf #UsherSyndrome
https://globalnews.ca/news/10803601/usher-syndrome-kids-blindness-deaf-treatment/
Canadian parents know their kids will go blind, maybe deaf. They’re making lasting memories now

Hanna Love says she and her husband are focused on giving their young kids as many memories as possible before they go blind and possibly completely deaf.

Global News