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Past Newsletters

Find out what's new with the Usher Syndrome Coalition by joining our mailing list. To catch up on past newsletters, review our archives below.

  • Our Usher syndrome community will soon gather in Chicago for the USH Connections Conference, an event that has been described as "life-changing". For many, this will be the first time they meet others impacted by Usher syndrome. It will be the first time they hear from researchers working tirelessly towards a cure. For the first time, they will know that they are not alone.

  • We can't thank you enough for your kindness and confidence in our work over the past year. This community, our USH family, continues to grow larger and stronger each day. And it's thanks to you that the Usher Syndrome Coalition was able to reach many new milestones in 2016.

  • We owned the equinox…again! Thank you to everyone that participated in our second annual Own the Equinox event.

  • My apologies to anyone who wished to attend the 2016 Usher Syndrome Family Conference in Seattle but has not yet registered

  • Like the Usher syndrome community we represent, the Usher Syndrome Coalition continues to grow in size and influence...

  • It is difficult to contain my excitement and not ramble on about our accomplishments, but we have so much to tell you about in this newsletter that I have to keep it quick. Read more...

  • I hope you'll join me in New Orleans next month for our annual one-day family conference. This is one of my favorite days of the year. Read more...

  • Usher syndrome is finally on the map!
    For a long time there was no way of knowing how much money NIH invested in Usher syndrome research. Read more...

  • We've been talking a lot about money lately, but with good reason. In a series of blog posts, I've explained how your investment in the Usher Syndrome Coalition will accelerate research. Read more...

  • The International Symposium on Usher Syndrome and Family Conference was the largest gathering of the Usher syndrome community ever. Read more...

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