Dear God, I feeling hardly for years aren’t doing a well because I found sone resources for deafblind folks does a fun and activity in USA. I don’t like an isloation home then found a support. #deafblind #deaf #ushersyndrome #retinitispigmentosa #legalblindness #guidingdog #servicedog #blind
October 31, 2026 at 12:04 AM
Dear God, I feeling hardly for years aren’t doing a well because I found sone resources for deafblind folks does a fun and activity in USA. I don’t like an isloation home then found a support. #deafblind #deaf #ushersyndrome #retinitispigmentosa #legalblindness #guidingdog #servicedog #blind
"Both sons have Usher syndrome, a rare genetic condition associated with hearing loss and progressive vision loss. They also face autism and difficulties with balance, making communication and everyday activities more challenging." www.khaleejtimes.com/uae/father-d... #ushersyndrome
‘I am their eyes, ears and voice’: Dubai father’s journey with his deafblind sons
Fawaz Al Hasban helps his sons, Ahmad and Osama, navigate a world they cannot see or hear, using tactile sign language, assistive technology, and a determination to help
www.khaleejtimes.com
October 23, 2026 at 2:08 PM
"Both sons have Usher syndrome, a rare genetic condition associated with hearing loss and progressive vision loss. They also face autism and difficulties with balance, making communication and everyday activities more challenging." www.khaleejtimes.com/uae/father-d... #ushersyndrome
Our son is going to run the The Hague Marathon on Nov. 1 to make research possible for the treatment of Sep and all other Ushers!
https://stichting-ushersyndroom.kentaa.nl/fundraisers/daan-wijsbek-2
#UsherSyndrome #stopush #fundraising #ushersyndroom #deafblind
https://stichting-ushersyndroom.kentaa.nl/fundraisers/daan-wijsbek-2
#UsherSyndrome #stopush #fundraising #ushersyndroom #deafblind
Rondje voor Sep!
De marathon van Den Haag lopen om onderzoek mogelijk te maken voor een behandeling voor Sep en alle andere Ushers!
stichting-ushersyndroom.kentaa.nl
October 18, 2026 at 3:57 PM
Our son is going to run the The Hague Marathon on Nov. 1 to make research possible for the treatment of Sep and all other Ushers!
https://stichting-ushersyndroom.kentaa.nl/fundraisers/daan-wijsbek-2
#UsherSyndrome #stopush #fundraising #ushersyndroom #deafblind
https://stichting-ushersyndroom.kentaa.nl/fundraisers/daan-wijsbek-2
#UsherSyndrome #stopush #fundraising #ushersyndroom #deafblind
"Among the swimmers is Bay Area native Rebecca Alexander, an award-winning author, psychotherapist, disability advocate and extreme athlete." 👏👏 www.einnews.com/pr_news/9489... #ushersyndrome #keeplistening
Ten Swimmers Going Deaf and Blind Take on Alcatraz to Accelerate Usher Syndrome Research
Ten people living with Usher syndrome will swim from Alcatraz to San Francisco to raise awareness and funds for research toward treatments.
www.einnews.com
October 14, 2026 at 1:17 PM
"Among the swimmers is Bay Area native Rebecca Alexander, an award-winning author, psychotherapist, disability advocate and extreme athlete." 👏👏 www.einnews.com/pr_news/9489... #ushersyndrome #keeplistening
Wonderful to see Lived Places Publishing authors Emma Boswell and Annmaree Watharow sharing their important book in support of understanding #Ushersyndrome: livedplacespublishing.com/book/isbn/97... #Disabilitystudies
October 9, 2026 at 2:32 PM
Wonderful to see Lived Places Publishing authors Emma Boswell and Annmaree Watharow sharing their important book in support of understanding #Ushersyndrome: livedplacespublishing.com/book/isbn/97... #Disabilitystudies
Do you or a family member have Usher syndrome and live in Ireland/Northern Ireland? Please help us by completing this form: tinyurl.com/MappingUSH - more info in the form and your response will help us greatly.
#UsherSyndrome
#UsherSyndrome
August 27, 2026 at 12:28 PM
Do you or a family member have Usher syndrome and live in Ireland/Northern Ireland? Please help us by completing this form: tinyurl.com/MappingUSH - more info in the form and your response will help us greatly.
#UsherSyndrome
#UsherSyndrome
Cell biologist Uwe Wolfrum of #MainzUniversity was honored by the Institute of #Ophthalmology at @ucl.ac.uk for his scientific research on #UsherSyndrome 👉 press.uni-mainz.de/mainz-based-c…
August 21, 2026 at 11:22 AM
Cell biologist Uwe Wolfrum of #MainzUniversity was honored by the Institute of #Ophthalmology at @ucl.ac.uk for his scientific research on #UsherSyndrome 👉 press.uni-mainz.de/mainz-based-c…
Emma Boswell shares more about how DbI works — a network of many networks! Learn more about the Usher Network and become a member yourself!
#dbi #deafblind #Ushersyndrome #UsherNetwork #inclusion
#dbi #deafblind #Ushersyndrome #UsherNetwork #inclusion
August 13, 2026 at 5:14 PM
Emma Boswell shares more about how DbI works — a network of many networks! Learn more about the Usher Network and become a member yourself!
#dbi #deafblind #Ushersyndrome #UsherNetwork #inclusion
#dbi #deafblind #Ushersyndrome #UsherNetwork #inclusion
Finally got it confirmed today: I have #UsherSyndrome type 2C. I've known it was probably that for like 2 years now but genetic testing takes time and I was actually expecting it to be 2A?
Anyway. Kind of a big day. Feeling emotional.
Anyway. Kind of a big day. Feeling emotional.
July 23, 2026 at 5:08 PM
Finally got it confirmed today: I have #UsherSyndrome type 2C. I've known it was probably that for like 2 years now but genetic testing takes time and I was actually expecting it to be 2A?
Anyway. Kind of a big day. Feeling emotional.
Anyway. Kind of a big day. Feeling emotional.
Hey Krista! Thanks for Joining us on The Blind Chick. Can't wait to have you back!
#TheBlindChick #UsherSyndrome #Aftersight
#TheBlindChick #UsherSyndrome #Aftersight
February 19, 2026 at 3:01 PM
Hey Krista! Thanks for Joining us on The Blind Chick. Can't wait to have you back!
#TheBlindChick #UsherSyndrome #Aftersight
#TheBlindChick #UsherSyndrome #Aftersight
This is important.
People can have hearing issues and not realize it, or how small decreases in hearing high or low tones can impact language learning.
Side note, good to get a hearing test as a baseline.
#LangSky
People can have hearing issues and not realize it, or how small decreases in hearing high or low tones can impact language learning.
Side note, good to get a hearing test as a baseline.
#LangSky
The artbook is in French. Might be the last drop to finally start learning to read it at least. It’s a difficult language, if you are hard of hearing, but I found this interesting www.survivefrance.com/t/a-hearing-...
August 14, 2025 at 2:10 PM
Good day ( apart from the traffic ) met an amazing guy wanting to help us raise the profile of usher syndrome. Watch this space . About to do an interview for the Express newspaper to highlight the condition . #cureusher #ushersyndrome #helpsaveadeafchildssight
November 29, 2024 at 3:47 PM
Good day ( apart from the traffic ) met an amazing guy wanting to help us raise the profile of usher syndrome. Watch this space . About to do an interview for the Express newspaper to highlight the condition . #cureusher #ushersyndrome #helpsaveadeafchildssight
"The second program, LYA-102, for treatment of Usher Syndrome Type 2, uses an optimized CRISPR technology to address mutations in exon 13 of the USH2A gene. This program may also translate into a therapeutic option for hearing loss." markets.businessinsider.com/news/stocks/... #ushersyndrome
Lyora Therapeutics Launches With Seed Funding to Propel Its Biologically Validated Pipeline of Genetic Medicines to Treat Inherited Retinal Diseases
PROVIDENCE, R.I., July 14, 2026 (GLOBE NEWSWIRE) -- Lyora Therapeutics, a biotech company developing a portfolio of genetic medicines targeting ...
markets.businessinsider.com
July 15, 2026 at 2:19 PM
"The second program, LYA-102, for treatment of Usher Syndrome Type 2, uses an optimized CRISPR technology to address mutations in exon 13 of the USH2A gene. This program may also translate into a therapeutic option for hearing loss." markets.businessinsider.com/news/stocks/... #ushersyndrome
"Her ability to hyper-focus on specific details allows her to excel at identifying prohibited items in baggage and spotting anomalies in travel documentation." streamlinefeed.co.ke/news/defying... #ushersyndrome
Defying the Odds: The Deafblind Airport Security Guard Securing Heathrow
Diagnosed with Usher's syndrome type 3, 25-year-old Paige Barnes has overcome systemic rejection to become a frontline security officer at Heathrow Airport.
streamlinefeed.co.ke
July 14, 2026 at 1:05 PM
"Her ability to hyper-focus on specific details allows her to excel at identifying prohibited items in baggage and spotting anomalies in travel documentation." streamlinefeed.co.ke/news/defying... #ushersyndrome
"to others with Usher Syndrome or who are deafblind and considering pursuing higher education or a research career, Karolina suggests: 'You’re allowed to adapt systems so that they work for you – this is not a weakness, it’s good design.'" enablemagazine.co.uk/one-in-a-mil... #ushersyndrome
One in a Million | Enable Magazine | Enable Magazine is the UK's leading disability and lifestyle title, filled with news, exclusive interviews and real-life stories.
Enable is the UK's favourite disability magazine, packed with the latest disability news and features.
enablemagazine.co.uk
April 28, 2026 at 1:16 PM
"to others with Usher Syndrome or who are deafblind and considering pursuing higher education or a research career, Karolina suggests: 'You’re allowed to adapt systems so that they work for you – this is not a weakness, it’s good design.'" enablemagazine.co.uk/one-in-a-mil... #ushersyndrome
"Three years ago, my dad was diagnosed with Usher syndrome (type 2C), a rare genetic disease that affects both hearing and vision. Deaf since the age of two, he began experiencing rapidly worsening vision." www.boston.com/community/bo... #bostonmarathon #ushersyndrome #keeplistening
Daughter runs Boston Marathon to honor dad with rare vision disorder
In our “Why I'm Running” series, Boston Marathon runners share what's inspiring them to make the 26.2-mile trek from Hopkinton to Boston.
www.boston.com
April 6, 2026 at 2:22 PM
"Three years ago, my dad was diagnosed with Usher syndrome (type 2C), a rare genetic disease that affects both hearing and vision. Deaf since the age of two, he began experiencing rapidly worsening vision." www.boston.com/community/bo... #bostonmarathon #ushersyndrome #keeplistening
“This is a goosebumps moment for our Radboudumc Usher expertise center: after years of scientific research, we are taking a major step forward in the treatment of retinal problems in people with Usher syndrome.” www.radboudumc.nl/en/news-item... #ushersyndrome #genetherapy #keeplistening
First patient with hereditary deafblindness treated with new experimental gene therapy - Possible prevention of blindness in hereditary deafblindness
27 January 2026
www.radboudumc.nl
January 29, 2026 at 8:51 PM
“This is a goosebumps moment for our Radboudumc Usher expertise center: after years of scientific research, we are taking a major step forward in the treatment of retinal problems in people with Usher syndrome.” www.radboudumc.nl/en/news-item... #ushersyndrome #genetherapy #keeplistening
"Figures estimate that there are 200-1,000+ Cajun descendants with the 'Acadian' variance, which means they are born deaf and gradually lose their sight." thecurrentla.com/2025/giving-... #cajun #louisiana #ushersyndrome #keeplistening
Giving voice to the ‘quiet Cajuns’
A new documentary spotlights the endurance and adaptability of Cajuns with genetic deaf-blindness.
thecurrentla.com
December 3, 2025 at 2:05 PM
"Figures estimate that there are 200-1,000+ Cajun descendants with the 'Acadian' variance, which means they are born deaf and gradually lose their sight." thecurrentla.com/2025/giving-... #cajun #louisiana #ushersyndrome #keeplistening
"She has been shortlisted for her groundbreaking work through the DeafBlind Everest Project, where she combines academic research, lived experience, and extreme adventure to break down barriers around disability." From: bathnewseum.com/2025/07/04/f... #ushersyndrome #keeplistening
From Bath to Mount Everest
I have never heard of Usher syndrome before, but l now know of a young woman – currently completing her studies at the University of Bath – who has to live with the deterioration of her…
bathnewseum.com
July 12, 2025 at 12:11 PM
"She has been shortlisted for her groundbreaking work through the DeafBlind Everest Project, where she combines academic research, lived experience, and extreme adventure to break down barriers around disability." From: bathnewseum.com/2025/07/04/f... #ushersyndrome #keeplistening
"I won the regionals - I was in total shock and I've been competing ever since.
"I've been in the GB squad for five years, played at Wimbledon twice.
"It's opened so many doors."
From: www.bbc.com/news/article... #tennis #wimbledon #ushersyndrome #keeplistening
"I've been in the GB squad for five years, played at Wimbledon twice.
"It's opened so many doors."
From: www.bbc.com/news/article... #tennis #wimbledon #ushersyndrome #keeplistening
'Tennis helped me come to terms with losing my eyesight'
Neil Bamford, 53, says the sport gave him a new lease of life decades after a rare diagnosis.
www.bbc.com
July 12, 2025 at 12:09 PM
"I won the regionals - I was in total shock and I've been competing ever since.
"I've been in the GB squad for five years, played at Wimbledon twice.
"It's opened so many doors."
From: www.bbc.com/news/article... #tennis #wimbledon #ushersyndrome #keeplistening
"I've been in the GB squad for five years, played at Wimbledon twice.
"It's opened so many doors."
From: www.bbc.com/news/article... #tennis #wimbledon #ushersyndrome #keeplistening
"when Chaikof was 11 years old, her older sister started having vision problems and was diagnosed with Usher syndrome Type 1F. It's a rare genetic disorder that causes deafness at birth, and then, over time, blindness." www.npr.org/sections/sho... #research #ushersyndrome #keeplistening @npr.org
She hoped key research could help save her eyesight. Then the Trump funding cuts came
Jessica Chaikof says research into gene therapies could someday save her eyesight. But she worries cuts to federal research funding could mean that therapy won't be ready in time.
www.npr.org
June 25, 2025 at 3:53 PM
"when Chaikof was 11 years old, her older sister started having vision problems and was diagnosed with Usher syndrome Type 1F. It's a rare genetic disorder that causes deafness at birth, and then, over time, blindness." www.npr.org/sections/sho... #research #ushersyndrome #keeplistening @npr.org
"It's such a rare condition and so many people have never heard of it and this community deserves to have people fighting for them and helping raise funds." From: www.walesonline.co.uk/news/uk-news... #ushersyndrome #research #science #funding #keeplistening
Emmerdale star Laura Norton was reluctant to publicly 'out' children's syndrome
In an interview she explained: "It's a genetic condition which causes hearing and vision loss.
www.walesonline.co.uk
June 12, 2025 at 1:17 PM
"It's such a rare condition and so many people have never heard of it and this community deserves to have people fighting for them and helping raise funds." From: www.walesonline.co.uk/news/uk-news... #ushersyndrome #research #science #funding #keeplistening
"This study provides the first evidence that mutations in AGBL5 can cause syndromic RP forms associated with hearing loss, probably due to dysfunction of sensory cilia in the retina and the inner ear." From: www.nature.com/articles/s41... #ushersyndrome #genetics
Variants in the AGBL5 gene are responsible for autosomal recessive Retinitis pigmentosa with hearing loss - European Journal of Human Genetics
European Journal of Human Genetics - Variants in the AGBL5 gene are responsible for autosomal recessive Retinitis pigmentosa with hearing loss
www.nature.com
December 16, 2024 at 2:08 PM
"This study provides the first evidence that mutations in AGBL5 can cause syndromic RP forms associated with hearing loss, probably due to dysfunction of sensory cilia in the retina and the inner ear." From: www.nature.com/articles/s41... #ushersyndrome #genetics
"Now, she says her vision is 'like looking through a straw,' and the thought of complete blindness is weighing heavily on her mind. 'It won’t kill me, but I am going to lose the whole lot,' Bird said on the Mental As Anyone podcast." From: 7news.com.au/entertainmen... #ushersyndrome
Beloved reality TV star Reggie Bird ‘scared’ as health condition worsens
The two-time Big Brother winner has opened up about her debilitating condition.
7news.com.au
December 3, 2024 at 5:16 PM
"Now, she says her vision is 'like looking through a straw,' and the thought of complete blindness is weighing heavily on her mind. 'It won’t kill me, but I am going to lose the whole lot,' Bird said on the Mental As Anyone podcast." From: 7news.com.au/entertainmen... #ushersyndrome