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Update on our Urgent Plea for Funding

October 17, 2017

by Mark Dunning

Hi everyone,

Thank you to the many, many of you that rushed quickly to our aid. We are not out of the woods yet, but we have received $25,000 in donations so far. Coupled with the $20,000 donation from my family, we have enough to keep us running for five months.

For those of you still thinking about the value of supporting the Coalition, consider this point:

Someday we are going to find treatments for Usher syndrome. Someday the dozens and dozens and dozens of wonderful researchers working tirelessly to find treatments for people with Usher syndrome will succeed. That day is coming and will be transformative for all of us. Decades of work will eventually succeed.

But that day is not yet here. There are no treatments. And so the tens of millions of dollars of investment in research has yet to improve the life of a single person with Usher syndrome. Make no mistake, they WILL come through and they will, in the future, make the lives of people with Usher better. They just haven't to date.

Meanwhile, for a fraction of the investment, the Usher Syndrome Coalition has created a community that has improved the lives of thousands of people with Usher syndrome over the last decade. The Coalition is there for the community while we live our lives without a treatment and, as John Lennon said, life is what happens while you're making other plans. While we wait for treatments, the Coalition is what makes life bearable.

And compared to research, we cost next to nothing to run! If we had 500 people donate $10 per week, skip one pizza per week, have one less cocktail, walk six blocks instead of taking an Uber, we would be able to EXPAND our services. And the community we serve is thousands of people. So give us $10/week and we'll get you through the tough times while we wait for treatments. Set up a recurring charge on your credit card here and you probably won't even notice it. But you will notice it if we're gone.

Thanks again, everyone, for stepping up and helping us out. You've kept us going in the short run. Now we need you to be there for us in the long run so we can be there for you.

Thank you,


Follow this link to keep the Coalition and our incredible Usher syndrome community alive:

p.s. Your contribution is tax-deductible.

Mailing Address:

Usher Syndrome Coalition

63 Great Road, Suite 207

Maynard, MA 01754

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