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Funding v. Supporting Research

November 30, 2015

by Mark Dunning

The Usher Syndrome Coalition supports research. The Usher Syndrome Coalition does not fund research. There is a difference. In a recent post I wrote about the formula for finding treatments for Usher syndrome and getting them in to clinic. As a quick summary we need:

  • Money
  • Clinical trial candidates
  • Community outreach
  • Community support
  • Community education
  • Collaboration among researchers
  • Recruitment of promising young investigators
  • Usher syndrome awareness
  • Advocacy
  • A roadmap for Usher syndrome research
  • Money again
  • And money a third time

All of these things need to happen for treatments to reach the clinic. All of them. Money, as you may have noticed, is important. Money is funding research. Money pays for equipment, researcher salaries, staff, rent, all the things necessary for a lab to do work. The Usher Syndrome Coalition does not provide money to researchers. The Usher Syndrome Coalition does not fund research or do research. We are not a research organization.

But we provide everything else, literally everything else, that is necessary to bring treatments to the clinic. That is supporting research. And when I write that we, the Usher Syndrome Coalition, provide everything else, I mean that we are often the ONLY organization providing critical components. So, no, the Usher Syndrome Coalition does not fund research. But we do provide absolutely critical support for research.

One prominent example was this past spring when we partnered with the Stephen A. Wynn Institute for Vision Research at the University of Iowa to give a Congressional Briefing on Usher Syndrome. The Usher Syndrome Coalition coordinated and promoted the event and arranged meetings with congressional staff. The Wynn Institute provided support, the keynote speaker (thank you Dr. Stone!), and have now edited and produced the video of the briefing that can be viewed at this link.

The briefing was a great way to raise awareness about Usher syndrome with members of Congress and was also an opportunity to advocate for more funding for Usher syndrome research. And now that we have this video, it’s also a great way to educate the community on some of the challenges researchers face and some of the incredibly creative solutions they are generating to confront those challenges.

The video begins with brief remarks from my daughter Bella and our Vice Chair Moira Shea to put a face on Usher syndrome for members of Congress. We were also honored to have Representative David Young of Iowa address his colleagues on behalf of the Usher community. Dr. Stone then spends the bulk of the briefing doing a terrific job of describing the challenges families face. He also describes gene therapy and induced pluripotent stem cells in layman’s terms which, as a layman myself, was much appreciated.

As you watch the video, you will notice that at one-point Dr. Stone raises a concern about excessively expensive treatments. Specifically, he mentions treatments that cost $1M per treatment. This was especially prescient given this Washington Post article that came out earlier this month. But Congress was already aware of the problem back in March because of our Congressional Briefing. That’s the type of advocacy on behalf of the Usher Syndrome Community that the Usher Syndrome Coalition can help provide.

And it works! In October a prominent audiologist was on Capitol Hill meeting with the staff of her Senator to advocate for a particular hearing loss legislation. When she mentioned Usher syndrome to the staff, she expected to have to explain the disease. But instead the staff replied that they knew all about Usher syndrome from our Congressional Briefing. They remembered Dr. Stone and Bella and Moira and the Usher Syndrome Coalition. And they continue to support our efforts today.

So please take the time to watch the video. You will learn a lot. And keep in mind that formula for finding treatments and all that we will need beyond dollars to make the incredible ideas expressed a reality. It will take the efforts of this entire community to bring affordable treatments to the clinic. The Usher Syndrome Coalition remains committed to supporting that effort on all levels.

Congressional Briefing on Usher Syndrome, March 19, 2015.

Mark Dunning, Congressman David Young, Bella Dunning, Moira Shea, Edwin Stone. Wynn Institute for Vision Research, Usher Syndrome Coalition.

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