Happy Usher Syndrome Awareness Day

Happy Usher Syndrome Awareness Day!?

Usher syndrome is the leading genetic cause of deafblindness in the world. It impacts hundreds of thousands of families, including mine. That's my daughter, Bella, on the right. She and Clare, on the left, both have Usher syndrome, became best friends, and, recently became roommates.

What did you picture when you imagined a person with deafblindness?? I’ll bet it was not a pretty, smiling, independent young woman.? How about two??

People with Usher syndrome are just that;? people.? They laugh, they cry, they tell jokes, enjoy good food, like to travel, enjoy movies, like to play sports, and, yes, enjoy music, as much as anyone else.? They have the same dreams, the same desires, and the same goals as people who do not have Usher syndrome.? They, too, want to go to college, fall in love, raise a family, and have a challenging career.? In other words, they are just like you.? They just don’t hear or see as well as you do.

Usher Syndrome Awareness Day exists for three reasons.? First, it’s to draw attention to the disease, to make you aware it exists, that it impacts hundreds of thousands of people around the world, and that it is difficult for families.? The second is to make you aware that it is a cause worth funding.? We found treatments for COVID-19, a disease that did not exist previously, within two years.? We have the knowledge and means to find treatments for rare diseases like Usher syndrome.? We just need the will and the funding.? Third, and most importantly, Usher Syndrome Awareness Day exists to put a face on Usher syndrome.? Beautiful, smiling faces, worthy of love and support.

So now what do you picture when you imagine a person with deafblindness?

Good.

If you would like to help, please support the Usher Syndrome Coalition, the largest Usher syndrome advocacy organization in the world.? They help families in seventy-two countries now and have changed the lives of thousands.? They are worthy of your investment.

Thanks for thinking of me and my family and Happy Usher Syndrome Awareness Day!