Today is Usher Syndrome Awareness Day. This rare inherited disease affects at least 25,000 people in the US and over 400,000 worldwide; it is the most common genetic cause of deafness and blindness, typically diagnosed in childhood. Children with Usher Syndrome are born with some level of hearing loss, and progressive vision loss begins at a young age and continues through adolescence. Usher Syndrome is a medical condition that is near and dear to our hearts for many reasons.
In honor of Usher Syndrome Awareness Day, 5 Points Music Sanctuary is proud to donate $555.55 to the Usher Syndrome Coalition to aid in the mission of raising awareness and accelerating research toward treatment and a cure.
We’d like to challenge everyone who cares about the mission at 5 Points Music Foundation to donate today. From $5 to $500, every penny helps fund critical research into this genetic disorder. And, with our help, that cure gets closer with every dollar donated and day worked.
Read more about Usher Syndrome.
Rebecca Alexander is the author of “Not Fade Away,” a personal account of her struggle with and advocacy for Usher Syndrome.
A qualitative study into life strategies for people with Usher Syndrome
USH Talks: Video podcast about the latest in research developments and community stories
Woman Battling Usher Syndrome Affected by Covid Pandemic
Hannah was planning on traveling the world while she still had her vision, but Covid has put those plans on hold. She is now raising awareness of the condition.
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