June 22, 2016
by Mark Dunning
My apologies to anyone who wished to attend the 2016 Usher Syndrome Family Conference in Seattle but has not yet registered. At nearly 200 people, we are sold out and can no longer safely accept any other registrants. On the one hand, it sickens us to have to turn away members of the Usher syndrome community. We never want to deny anyone in the Usher syndrome community an opportunity to gain knowledge and network with researcher and other families. On the other hand – WOO-HOO! WE’RE SOLD OUT!
This is by far the largest one day family conference we have held (the three day symposium in 2014 drew over 300 people). The demand was much higher than we anticipated and, again, YES!!! That’s what we want! An active community is the key to treating Usher syndrome on many levels.
An active community, one that travels, one that turns out en masse, is necessary to combat the social isolation often associated with Usher syndrome. The fact that this family conference is not only growing, but doing so faster than we anticipated, means that more and more people with Usher syndrome are optimistic. They are no longer anchored in their homes by a lack of information or a lack of motivation. They are turning out in record numbers. They are drawn by hope.
An active community, one that travels, one that turns out en masse, is necessary for governmental investment in science. If you are in the United States, you can’t go a day without hearing about how little Congress accomplishes, how rarely they agree, how infrequently they advance important initiatives. But that’s not the experience of this mobile and vocal Usher syndrome community. For the fourth year in a row we have gotten report language in to the appropriations bill. Senators and members of Congress make time on their calendars to see us. They are inspired by us. Because in spite of the difficulties this community faces, we turn out in large numbers.
An active community, one that travels, one that turns out en masse, is critical, absolutely critical, to finding treatments for Usher syndrome. There will be no treatments without clinical trials. There will be no clinical trials without Usher syndrome families participating as candidates. A community that turns out in great numbers tells the researchers that their work won’t go unfinished. We will have the candidates they need to deliver treatments.
And they seem to be recognizing that this Usher syndrome community is especially active. Every week it seems we are contacted from another scientist trying to reach the people with Usher syndrome. Some are looking for information from people with Usher syndrome about the progression of the disease. Some believe they have potential treatments and are looking for potential candidates. All are energized by the enthusiastic response they get from this community.
THAT’S WHAT I’M TALKING ABOUT!
So again, I apologize to those who wished to attend the family conference this year for whom we have no space. We would have loved for you to attend. But we should all celebrate this because it is a GREAT problem to have. We are becoming a community that is bursting at the seams, demanding more opportunities, speaking with an ever larger chorus of voices.
And next year, in Chicago, we’ll be sure to have enough room to welcome everyone. Unless, of course, this community once again exceeds all expectations.
Here’s hoping for another sell-out.