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Tuesday, August 4, 2015

7th Annual Usher Coalition Family Conference

The man in the picture below, Mark Dunning, Chairman of the Usher Coalition I might add, thinks and truly believes he is just a regular guy.

I hope one day he realizes that he is FAR FAR FAR more than just a regular guy. He says the only thing that sets him apart is that he has a daughter with Usher Syndrome. Which couldn't be further from the truth.

He may, at one time, have been a regular guy. But he was a regular guy with an extraordinary vision, a lot of determination, and a caring heart. He set out starting the Decibels Foundation, which lead to The Usher Syndrome Coalition, (anyone recognize that face on the Homepage?) which has close to 1,000 members from countries far and wide. Plus he has a full-time job. And instead of vacations to the beach, he uses his vacations to visit research facilities, and to speak on behalf of the people with Usher Syndrome, spreading awareness, educating others about the advancements in treatments and clinical trials, and offering support and resources to people trying to cope with the emotional and physical effects from Usher Syndrome.

The fist time I met Mark in person was at the Usher Syndrome Coalition's Family Conference in St. Louis just 2 months after we got Hunter's Usher 1C diagnosis. After I introduced myself, he remembered our email correspondence and asked how old Hunter was. I said 16 months, and I will never forget his response-- "You guys have nothing to worry about, he won't even be affected by the vision loss". I think his response was a combination of his true optimism towards a cure for Usher Syndrome, and a deep faith and hope that if he continues repeating it to himself and others, that it will eventually come true. Although we aren't 'blind' to the fact that he's already 4 years old and there are no clinical trials in place for Usher 1C, I know that there are numerous people out there who are working day in and day out as far as humanly possible, to make it happen.

Mark recently wrote a blog post that really touched me. As I'm sure it did the entire Usher community. He isn't just a regular guy. He's a talented and touching writer, and an inspiration who it at the forefront of this grass roots effort to find a cure. Don't worry Mark, that's what we all want for Hunter... as well as every individual affected by Usher Syndrome around the world.

Since the family conference was in New Orleans this year, we had the pleasure of bringing both of our boys and having some of family members attend as well. My Aunt Kathleen Blanco, former Governor of LA gave the welcome speech, which was very inspiring to everyone. My parents, Blair's mom and his Aunt, Uncle and cousin were there as well.

And as you can see below, Hunter was VERY proud to be on the Coalition's new banner! Our photographer, Kent Fleming, really does an amazing job at capturing the most captivating shots!

We are so blessed with such a supportive network.
Thank you to all of you who supported our conference in so many various ways. Your kind words, your donations, your thoughts and prayers are always appreciated.

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