Owning the Equinox from a Squirmer's Perspective

Owning the Equinox from a Squirmer's Perspective

August 24, 2017

by Nancy O’Donnell

The primary purpose of the Own the Equinox campaign is to raise awareness about Usher syndrome. I’m a teacher. I love teaching. Education allows people to make informed choices about their lives, which we think is a good thing.

The second purpose of Own the Equinox is to raise funds for the Usher Syndrome Coalition.  

Ugh! I hate fundraising. I would rather do without than ask. But the Coalition is different because…well…I can’t imagine “doing without” the Coalition.

You may wonder what the Coalition does with the funds we raise. Here’s a summary:

There are foundations and non-profits whose sole purpose is to fund research on Usher syndrome to the tune of millions of dollars. That is a necessary service and we thank them for that. But, we do not fund research.

The Coalition is actually the bridge that was previously missing between the research community and the Usher community. Our goal is to find everyone with Usher syndrome so that we can share information and support, and be THE source of accurate and current info about Usher syndrome through our website.

We have relationships with researchers so that when clinical trials are starting, we can let the Usher community know. When treatments and cures for vision loss, balance problems and progressive hearing loss become available, we can let people know. When members of the Usher community experience additional health issues and want to know if those issues are related to Usher syndrome (or not), we are ready to collaborate with universities and research facilities to contact potential participants through our USH Trust registry.

There are an estimated 400,000 people with Usher syndrome worldwide. We want to find everyone so that they know what’s available to them through the Coalition, such as:

• an annual conference, where we bring top researchers, individuals with Usher and families together to share updates on their work;
• the USH Blue Book, an email based forum to connect the Usher community;
• monthly presentations by top researchers around the world (USH Talks);
• genetic testing for everyone, regardless of their financial situation (Unraveling USH);
• an electronic newsletter;
• outreach and a growing list of international experts;

The Coalition accomplishes this and more through our work with educational organizations, vocational rehabilitation agencies, family associations, universities and other entities, worldwide.

Amazingly, we do this with one full-time executive director, one part time administrative assistant and one part time registry director (me). Ninety-five percent of our funding is through private donations, the rest through small grants, and every year is a nail biter as to whether our fundraising will keep us going for another year. The community thus far has been generous. Thank you for that. We take that as a sign that we’re on the right track.

I love my job, and, more importantly, I love what the Coalition does. Soooo, as much as I HATE fundraising (I squirm, I hem and haw, I get embarrassed, I make excuses for people before they even have a chance to say “Yes”), I jumped into Own the Equinox last year and committed to "Walking a Mile for Usher syndrome" every day. My friends and family were happy to sponsor me, and through them, we raised about $1000.

This year, I am participating again, working with a friend with Usher on a fun and special 26-day awareness project. We think we’re going to bust the chart on awareness and, hopefully, raise some funds for the Coalition.

Whether you want to raise awareness about Usher syndrome, or raise funds for the Coalition, or both – Own the Equinox is a great way to do it. Every effort, every bit of positive energy, moves us forward, enlarges our space and - hopefully - makes life a bit "richer" (on multiple levels) for the world at large. And THAT is a gift that is sorely needed right now.

ASL for USH

Educating the ASL community about Usher syndrome, one vlog at a time

Check out Nancy and Kevin Richmond's Own the Equinox awareness project! If you make a donation of any amount to their team page, each new ASL vlog will be sent directly to your inbox! Here's a sneak peek at Day 1's vlog "What is Own the Equinox?" Don't forget to click the "CC" box at the bottom right of the video to turn on the captions.