Hello, Are You Out There?

Greetings, Usher folks and allies -

It’s been nearly a month since I posted this site up in hopes there would be several dozen Usher’s flocking here and helping out. I even posted this link on my Facebook and only saw many Usher’s “liking” the site but not “sharing”/

This is one example of why many Usher’s aren’t vocal or recognized for their issues. Many people in the Deaf and Hearing communities are so ignorant (mostly unintentionally) about the needs and perspectives of Usher Syndrome, and in turn, many Usher people feel rejected or isolated.

This is now the time to spread awareness about Usher Syndrome. I have always been vocal and upfront about what I go through, what I need in terms of communication and support, and sharing what resources there are out there for parents, fellow Usher’s and varied community members. Because I SEE and FEEL  that the people who learn more about this condition are more understanding, supportive and respectful towards Ushers if there is an open air about this.

However, people, just know that I can only do so much… I can plant a seed, encourage people to forge ahead with an idea, and advise – but I refuse to do something entirely on my own or with one or two other very motivated people. Sure, mega corporations and renowned organizations have blossomed with one or five people, but I have my limits.

If you are interested in helping out, leave a comment and your email address (fill in the comment information and email won’t show, I’ll only view it).

Spread the word. Please. Make this an international effort, not out of a house in a small town in Eastern Ontario, Canada.

Thank you. Ushers unite.

Coco xx

A seedling that will grow into an olive branch…

Greetings to all of the Usher Syndrome folks around the world!

An idea had been floating around in the Usher Syndrome community of Canada to create a special day where thousands of Deaf people afflicted with the degenerating eye disorder, Retinitis Pigmentosa, can come together and give support to others in light of their challenges, feelings of despair, and most of all – triumphs.

What we will do here on this new site is to open up forums for discussion as to what day the International Usher Sundrome Unity Day should fall on; what topics we need to cover; who can moderate this site leading up to the day and year-round; and a couple of other topics.

This kind of event will surely reach many individuals with Ushers, their sighted partners/colleagues/classmates/friends…. and the general public. May this day be held in schools, workplaces, households, public forums and in conversations all over the world.

Join us to witness the strength and the challenges of Usher Syndrome people around the globe and celebrate the fact that we are UNITED.

Tactile love to all of you

Coco Roschaert

Co-founder, IUSUD