Usher Syndrome Coalition
@ushercoalition.bsky.social
A non-profit organization whose mission is to bridge the gap between researchers and the global Usher Syndrome community.
www.usher-syndrome.org
www.usher-syndrome.org
Learn more about the LUNA clinical trial for USH2A: Join the USH Trust to get an invite to our webinar with Sepul Bio! u3655239.ct.sendgrid...
May 1, 2025 at 12:00 PM
Learn more about the LUNA clinical trial for USH2A: Join the USH Trust to get an invite to our webinar with Sepul Bio! u3655239.ct.sendgrid...
On International Guide Dog Day, we celebrate the four-legged heroes who help people with vision loss reclaim independence. From navigating streets to mastering daily routes, these incredible dogs - and the teams who train them - make the world more accessible and full of possibility.
April 30, 2025 at 12:00 PM
On International Guide Dog Day, we celebrate the four-legged heroes who help people with vision loss reclaim independence. From navigating streets to mastering daily routes, these incredible dogs - and the teams who train them - make the world more accessible and full of possibility.
Hope for RP! jCyte, a California biotech company, is testing jCell, a new gene-independent cell therapy for all RP types. On April 22, 2025, jCyte announced they are recruiting adults with RP in Southern California for their JC02-88 trial. Learn more at www.jcyte.com/JC02-8....
April 29, 2025 at 12:00 PM
Hope for RP! jCyte, a California biotech company, is testing jCell, a new gene-independent cell therapy for all RP types. On April 22, 2025, jCyte announced they are recruiting adults with RP in Southern California for their JC02-88 trial. Learn more at www.jcyte.com/JC02-8....
You’re in the doctor’s office: one diagnosis and your world shifts. Questions swirl: genetic testing, tech, white canes. It’s overwhelming! That’s why we launched Rare Genes - to remind you that others share this path. You are not alone. Your story matters. #UsherSyndrome #RareGenes
April 21, 2025 at 12:00 PM
You’re in the doctor’s office: one diagnosis and your world shifts. Questions swirl: genetic testing, tech, white canes. It’s overwhelming! That’s why we launched Rare Genes - to remind you that others share this path. You are not alone. Your story matters. #UsherSyndrome #RareGenes
When you get genetic testing, you're not just learning more about your health—you're also helping scientists work toward future treatments for everyone with Usher syndrome. Genetic testing is one of the key ways we can provide the information and data researchers need. www.usher-syndrome.o...
April 9, 2025 at 12:00 PM
When you get genetic testing, you're not just learning more about your health—you're also helping scientists work toward future treatments for everyone with Usher syndrome. Genetic testing is one of the key ways we can provide the information and data researchers need. www.usher-syndrome.o...
Rare Genes: The Powerful Foundation of the Usher Syndrome Community
Two simple words—rare genes—bring the Usher syndrome community together. But what do they really mean, and why are they so important?
When you hear the phrase "rare genes," what do you think of?
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Two simple words—rare genes—bring the Usher syndrome community together. But what do they really mean, and why are they so important?
When you hear the phrase "rare genes," what do you think of?
1/7
April 4, 2025 at 8:07 PM
Rare Genes: The Powerful Foundation of the Usher Syndrome Community
Two simple words—rare genes—bring the Usher syndrome community together. But what do they really mean, and why are they so important?
When you hear the phrase "rare genes," what do you think of?
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Two simple words—rare genes—bring the Usher syndrome community together. But what do they really mean, and why are they so important?
When you hear the phrase "rare genes," what do you think of?
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We know the power of stories — they inform, connect, and support us. That's why we're sharing the story behind Rare Genes.
Part of the inspiration for Rare Genes came from our DNA itself. Usher syndrome is inherited through a rare genetic condition.
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Part of the inspiration for Rare Genes came from our DNA itself. Usher syndrome is inherited through a rare genetic condition.
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April 3, 2025 at 12:00 PM
We know the power of stories — they inform, connect, and support us. That's why we're sharing the story behind Rare Genes.
Part of the inspiration for Rare Genes came from our DNA itself. Usher syndrome is inherited through a rare genetic condition.
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Part of the inspiration for Rare Genes came from our DNA itself. Usher syndrome is inherited through a rare genetic condition.
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#USHRareGenes is here!!
We are announcing the launch of Rare Genes, a campaign that reintroduces the Usher Syndrome Coalition, our initiatives, and our global community to those we have yet to meet.
Over the past month, we’ve shared teasers across our channels, and now it's time to dive in!
We are announcing the launch of Rare Genes, a campaign that reintroduces the Usher Syndrome Coalition, our initiatives, and our global community to those we have yet to meet.
Over the past month, we’ve shared teasers across our channels, and now it's time to dive in!
April 2, 2025 at 8:11 PM
#USHRareGenes is here!!
We are announcing the launch of Rare Genes, a campaign that reintroduces the Usher Syndrome Coalition, our initiatives, and our global community to those we have yet to meet.
Over the past month, we’ve shared teasers across our channels, and now it's time to dive in!
We are announcing the launch of Rare Genes, a campaign that reintroduces the Usher Syndrome Coalition, our initiatives, and our global community to those we have yet to meet.
Over the past month, we’ve shared teasers across our channels, and now it's time to dive in!
Usher syndrome, the leading genetic cause of combined deafblindness, affects ~400,000 people worldwide. In this USH Talks episode, Dr. Kumaramanickavel discusses genetic counseling in India as well as advances in genetics and therapy. youtu.be/WmcQPOCBzAk...
March 27, 2025 at 12:00 PM
Usher syndrome, the leading genetic cause of combined deafblindness, affects ~400,000 people worldwide. In this USH Talks episode, Dr. Kumaramanickavel discusses genetic counseling in India as well as advances in genetics and therapy. youtu.be/WmcQPOCBzAk...
The Usher Syndrome Coalition's "USH Trust" is the largest international contact database of individuals with Usher syndrome, and our most powerful tool to connect, inform, and support individuals in the USH community. Join the USH Trust and be the first to learn about the latest research and trials.
March 17, 2025 at 12:00 PM
The Usher Syndrome Coalition's "USH Trust" is the largest international contact database of individuals with Usher syndrome, and our most powerful tool to connect, inform, and support individuals in the USH community. Join the USH Trust and be the first to learn about the latest research and trials.
Make sure you're on our mailing list to get our monthly "Grounded In Science" newsletter March 10! www.usher-syndrome.o...
March 7, 2025 at 1:00 PM
Make sure you're on our mailing list to get our monthly "Grounded In Science" newsletter March 10! www.usher-syndrome.o...
World Hearing Day 2025 highlights the importance of hearing and ear care. Hearing loss is one of three sensory impacts of Usher syndrome, and its progression varies across its three types. Up to 10% of individuals with congenital bilateral sensorineural hearing loss may have Usher syndrome.
March 3, 2025 at 1:00 PM
World Hearing Day 2025 highlights the importance of hearing and ear care. Hearing loss is one of three sensory impacts of Usher syndrome, and its progression varies across its three types. Up to 10% of individuals with congenital bilateral sensorineural hearing loss may have Usher syndrome.
Rare Disease Day, held on the last day of February, raises awareness of rare diseases like Usher syndrome, a genetic disorder affecting vision, hearing, and balance. With over 25,000 U.S. cases and 400,000 worldwide, this day highlights the importance of scientific research to the USH community.
February 28, 2025 at 8:47 PM
Rare Disease Day, held on the last day of February, raises awareness of rare diseases like Usher syndrome, a genetic disorder affecting vision, hearing, and balance. With over 25,000 U.S. cases and 400,000 worldwide, this day highlights the importance of scientific research to the USH community.
The Be My Eyes app connects the blind/low-vision community with sighted volunteers via live video and AI to assist with directions, text reading, and more. Ray-Ban Meta glasses connect with the app, offering a hands-free experience through their camera and speakers. Explore: www.bemyeyes.com/
February 26, 2025 at 1:00 PM
The Be My Eyes app connects the blind/low-vision community with sighted volunteers via live video and AI to assist with directions, text reading, and more. Ray-Ban Meta glasses connect with the app, offering a hands-free experience through their camera and speakers. Explore: www.bemyeyes.com/
Cochlear implants help people who are deaf hear sound by stimulating the cochlea to send sound signals to the brain through a behind-the-ear (BTE) device. Leading providers include Advanced Bionics, Cochlear, and MED-EL. For those with Usher syndrome, implants are a personal choice.
February 25, 2025 at 1:00 PM
Cochlear implants help people who are deaf hear sound by stimulating the cochlea to send sound signals to the brain through a behind-the-ear (BTE) device. Leading providers include Advanced Bionics, Cochlear, and MED-EL. For those with Usher syndrome, implants are a personal choice.
USH Ambassadors help grow the global Usher syndrome community by educating on Usher syndrome, the USH Trust, and working with local agencies. Many have a personal connection to USH. Dr. Jasmine Simmons, an audiologist and USH Ambassador, shares her inspiring story here: tinyurl.com/USHjs.
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Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.
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February 20, 2025 at 1:00 PM
USH Ambassadors help grow the global Usher syndrome community by educating on Usher syndrome, the USH Trust, and working with local agencies. Many have a personal connection to USH. Dr. Jasmine Simmons, an audiologist and USH Ambassador, shares her inspiring story here: tinyurl.com/USHjs.
Be the Change. Raise awareness for Usher syndrome and support the Coalition in connecting researchers with the USH community. Our store has a range of styles and designs, with a portion of each purchase going to the Coalition. Let’s amplify the USH community’s voice. tinyurl.com/USHbonfire
February 19, 2025 at 1:00 PM
Be the Change. Raise awareness for Usher syndrome and support the Coalition in connecting researchers with the USH community. Our store has a range of styles and designs, with a portion of each purchase going to the Coalition. Let’s amplify the USH community’s voice. tinyurl.com/USHbonfire
February is Low Vision Awareness Month. Today, we feature Dr. Jasmine Simmons, an advocate, author, audiologist, traveler, and accessibility consultant passionate about raising awareness for Usher syndrome. Learn of Jasmine's advocacy work and her children's book: www.drjasminesimmons...
February 17, 2025 at 1:00 PM
February is Low Vision Awareness Month. Today, we feature Dr. Jasmine Simmons, an advocate, author, audiologist, traveler, and accessibility consultant passionate about raising awareness for Usher syndrome. Learn of Jasmine's advocacy work and her children's book: www.drjasminesimmons...
Big news for RP treatment! N-acetylcysteine amide (NACA) is a stronger, better-absorbed form of NAC that may help protect vision. Nacuity’s NPI-001, a special NACA formula, received FDA Fast Track & Orphan Drug status after promising early trial results! tinyurl.com/nacuity2...
Usher Syndrome Coalition: Balancing Life with Usher Syndrome
Discover the journey of living with Usher Syndrome and how to find balance in life. Join Usher Syndrome Coalition for support and resources.
tinyurl.com
February 13, 2025 at 1:00 PM
Big news for RP treatment! N-acetylcysteine amide (NACA) is a stronger, better-absorbed form of NAC that may help protect vision. Nacuity’s NPI-001, a special NACA formula, received FDA Fast Track & Orphan Drug status after promising early trial results! tinyurl.com/nacuity2...
Flashlights are affordable and versatile. They help navigate dark areas, find dropped items, and spot reflective signs. While phone flashlights work, they can quickly drain battery life. Flashlight features now include waterproofing, 180-degree wide beams, and adjustable color and brightness.
February 12, 2025 at 1:00 PM
Flashlights are affordable and versatile. They help navigate dark areas, find dropped items, and spot reflective signs. While phone flashlights work, they can quickly drain battery life. Flashlight features now include waterproofing, 180-degree wide beams, and adjustable color and brightness.
Today, we celebrate the brilliant women and girls in science! Their groundbreaking work in medicine, engineering, chemistry, and more has significantly impacted their fields. Check out this article that shares the historical stories of women and girls in STEM! obamawhitehouse.arch...
February 11, 2025 at 1:00 PM
Today, we celebrate the brilliant women and girls in science! Their groundbreaking work in medicine, engineering, chemistry, and more has significantly impacted their fields. Check out this article that shares the historical stories of women and girls in STEM! obamawhitehouse.arch...
Discover how NAC, an FDA-approved oral antioxidant used to treat acetaminophen overdose, may help slow vision loss from RP. Sponsored by the Wilmer Eye Institute, Johns Hopkins University, this phase III trial is now recruiting participants. USH Talk: youtu.be/xufgBOC1zJg...
February 7, 2025 at 3:17 PM
Discover how NAC, an FDA-approved oral antioxidant used to treat acetaminophen overdose, may help slow vision loss from RP. Sponsored by the Wilmer Eye Institute, Johns Hopkins University, this phase III trial is now recruiting participants. USH Talk: youtu.be/xufgBOC1zJg...
Tinnitus Awareness Week is February 3-9, 2025. Tinnitus causes ringing, buzzing, or humming in one or both ears, only heard by the individual, and can be a sign of hearing loss. While there's no cure, management strategies can help. What helps you manage tinnitus?
February 4, 2025 at 11:46 PM
Tinnitus Awareness Week is February 3-9, 2025. Tinnitus causes ringing, buzzing, or humming in one or both ears, only heard by the individual, and can be a sign of hearing loss. While there's no cure, management strategies can help. What helps you manage tinnitus?
February is Low Vision Awareness Month. Retinitis pigmentosa, a key component of Usher syndrome, causes symptoms like tunnel vision, night blindness, and blurry vision. Tools like braille, guide dogs, and screen readers aid independence. More awareness will lead to better design and inclusivity.
February 1, 2025 at 1:00 PM
February is Low Vision Awareness Month. Retinitis pigmentosa, a key component of Usher syndrome, causes symptoms like tunnel vision, night blindness, and blurry vision. Tools like braille, guide dogs, and screen readers aid independence. More awareness will lead to better design and inclusivity.
Gung Hei Fat Choi. San Nin Fai Lok! (We wish you happiness and prosperity. Happy New Year!)
Happy Chinese New Year! 2025 is the Year of the Snake, the sixth animal in the Chinese zodiac. Representing the wood element, this year's wood snake symbolizes adaptability, charisma, intuition, and growth.
Happy Chinese New Year! 2025 is the Year of the Snake, the sixth animal in the Chinese zodiac. Representing the wood element, this year's wood snake symbolizes adaptability, charisma, intuition, and growth.
January 29, 2025 at 1:00 PM
Gung Hei Fat Choi. San Nin Fai Lok! (We wish you happiness and prosperity. Happy New Year!)
Happy Chinese New Year! 2025 is the Year of the Snake, the sixth animal in the Chinese zodiac. Representing the wood element, this year's wood snake symbolizes adaptability, charisma, intuition, and growth.
Happy Chinese New Year! 2025 is the Year of the Snake, the sixth animal in the Chinese zodiac. Representing the wood element, this year's wood snake symbolizes adaptability, charisma, intuition, and growth.