Why You Should Attend the International Symposium on Usher Syndrome

May 9, 2014

by Mark Dunning

(Please note: The final ARVO report from Jennifer Phillips will be coming out on Monday.)

You should attend the international symposium on Usher syndrome July 10-12th in Boston. I don’t know who you are but I know if you are reading this blog post, you should attend the symposium. You should attend because you are a member of the Usher syndrome community and this will be the largest gathering of the Usher syndrome community in history. 

You should attend because we want all the leading Usher syndrome experts in the world to attend. That’s you. Whether you are a researcher, a clinician, a genetic counselor, a caregiver, or a person with Usher, whether you work with the disease, have an interest in the disease, or live with the disease, you have something valuable to contribute. The more great minds we get together, the more successful the symposium will be. 

You should attend because the goal of symposium is the creation of a roadmap. The roadmap will be created by you and other experts on Usher syndrome. It will identify our knowledge gaps on the disease and it will guide future research efforts for years to come. You will help prioritize funding for Usher syndrome.

You should attend because the National Eye Institute (NEI) and the National Institute for Deafness and Communications Disorders (NIDCD) have said that a roadmap would be very helpful to them in identifying which projects they should fund. Other institutes at NIH will be listening as well. And there will be other funding organizations in attendance. Great supporters of Usher research such as the Foundation Fighting Blindness, Hear See Hope, the Usher III Initiative, the Megan Foundation, Usher 20/20, and others will be part of a funding panel. So if you are a researcher, you will have an opportunity to discuss your ideas with the people that would be interested in funding them. And if you are a family that might be interested in fund raising, you can speak directly to some of these great organizations funding Usher research.

You should attend because we want the best and brightest young investigators to choose Usher syndrome research. We have travel grants and reduced rates for students interested in Usher research. And nothing attracts young investigators more than a vibrant, dedicated community where they can have a quick, deep, and long-lasting impact. You are part of the community.

You should attend so you can see the scope of the community you have helped build. There will be speakers from seven different countries. There will be attendees from nearly a dozen. Our registry now has families from 29 different countries. You will have an opportunity to meet families and researchers from around the world. 

You should attend because you can directly help Usher families. If you are a researcher or genetic counselor or a clinician, they need to hear from you. They need to hear what you are working on and where you think Usher research is going. They need to hear the hope you bring. And if you are a family, they need to know that you share the same experiences, fears, and hopes. They need your advice on how to live with the disease. There will be breakout sessions tailored just for you. Every family conference produces lifelong friends. You don’t want to miss that opportunity. 

You should attend because US Senators and Representatives will be watching. This past year there was language specific to Usher syndrome in the omnibus spending bill that was approved. This was the first time Usher was a focus of Congress. This year we are expecting even more. We are working directly with Senators and Representatives from several states on ways to ensure that there is more federal funding available for Usher syndrome research. The more people that attend the symposium, the more Congress will pay attention.

You should attend because the symposium will be accessible. NIDCD has graciously provided funding to ensure that all interpretation needs are met. The symposium will be held at the Joseph B. Martin Conference Center at Harvard Medical School. It is looped and has all the latest accessibility technology. You will be able contribute.

Now that you are convinced that you should attend, you should not worry about getting to the Symposium. We have travel grants for young investigators. Eligible families can apply to Miracle Flights for Kids for free airline travel. We want you there and will make every effort to help you get there.

A lot of effort from some wonderful people has gone in to planning this symposium. You will not regret attending. I’m glad I convinced you to come. I look forward to seeing you in July!

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