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Thanks on Thanksgiving

November 19, 2015

by Mark Dunning

Here in the U.S. we are coming up on our traditional Thanksgiving holiday. I figured it was a good time to say thank you to everyone who has helped the Usher Syndrome Coalition and the Usher syndrome community this year. Then I realized that was impossible. There were just too many people who helped out. So as you read this post keep in mind that there are probably ten people who deserve thanks that aren’t mentioned for every one that is. To call this a growing, vibrant community is an understatement.

We started our year in Washington, DC. Thank you to Ed Stone and the folks at the University of Iowa for helping us with our Congressional briefing on Usher syndrome. I also want to thank Representative David Young of Iowa for coming to speak at the briefing and for taking the time to chat with my daughter afterward. She will never forget the experience. Neither will I.

Thank you, also, to the numerous members of Congress and their staffs for helping us in our effort to make Usher syndrome a higher priority with NIH. In particular, thank you to Desiree Mowry, Laura Friedel, and Senator Blunt of Missouri for helping get our language in the committee report. Thank you to Tasha Kellett and Representative Tsongas of Massachusetts for circulating a dear colleague letter on behalf of the Usher syndrome community and thank you to Representatives John Conyers of Michigan, Sheila Jackson Lee of Texas, and Earl “Buddy” Carter of Georgia for signing it. A special thank you to Matt Cartwright of Pennsylvania for not only signing on to our dear colleague letter, but also introducing the Cogswell-Macy Act for deafblind students.

And, of course, thank YOU, the Usher syndrome community, for taking the time to write or meet with your representatives. A big reason our message was heard was because everyone delivered the same message. So thanks to the great folks at Hill and Knowlton for helping us with our messaging and to Barney Skladany for helping us deliver it at the right time to the right people.

I have an anecdote to demonstrate our impact. A few weeks ago a friend was visiting with Senator Warren’s staff to talk about another matter. When she mentioned Usher syndrome, the Senator’s staff said enthusiastically that they knew all about Usher syndrome already. They remembered the visits from Usher families. So thank you to everyone for making the effort. It is making a difference.

The summer brought even more success. Thanks, again, to Ed Stone and the University of Iowa, this time for creating the first laboratory dedicated to Usher syndrome research and naming it in honor of one of the founders of the Usher Syndrome Coalition, Bill Kimberling. And, of course, I want to thank Bill for finding the strength to make the long ride from Omaha to the dedication ceremony and to recently retired University President Sally Mason for speaking and (gulp!) graciously introducing me. Boy, did I feel unworthy that day. Thanks, too, to all the researchers and friends of Bill who attended. Bill didn’t stop smiling all day.

Thank you to former Louisiana Governor Kathleen Blanco for speaking at the family conference in New Orleans. And thank you to the researchers who travelled from across the country to meet the families, including Mark Pennesi, Dennis Clegg, and Ben Shaberman as well as Nicolas Bazan, who didn’t travel far at all. We had a wonderful family panel with a pair of Arabies as well as Carol Brill from Ireland, Conner McKittrick from Seattle, and Jessica Chaikof from Massachusetts. Of course, none of it would have been possible without the efforts of the Elise Faucheaux and her family and Jennifer Lentz and her team at LSU.

Whew. That’s already a lot of names. But there’s more.

The Own the Equinox awareness campaign doesn’t happen without Caroline Brown and her friends in Alaska. And there isn’t an Usher Syndrome Awareness Day without Senator Wyden. I would start to thank all the people that made incredible contributions to raise awareness about Usher syndrome but, I mean, go to this page, scroll down and look at that list! And for everyone on that list there were ten more quietly supporting them. But I do want to say a special thank you to David Shepherd and the folks in Australia for starting the day right. And, of course, thank you to Brian Switzer for his inspirational run, his family for their warmth, and Marco from Athletes for Charity for coming all the way from Germany to be Brian’s sighted guide.

I will stop now and apologize for not mentioning the dozens and dozens of other people who have contributed mightily to the Usher syndrome community this year, from Lorne in Canada to the good folks in the Netherlands, to the Usher Syndrome Coalition Board. OK, I’ll stop. I’m sure you’re sick of reading names.

Have a good Thanksgiving everyone, wherever you are. We have a lot to be thankful for this year. It really is an incredible time for this Usher syndrome community.

Alright, one last thank you, to my blog partner and editor, Jennifer Phillips, for rewriting this in to something understandable, per usual.

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