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Grassroots and Hummingbirds

February 10, 2014

by Mark Dunning

This post is about you. It’s a thank you. Your efforts are starting to have an impact on the federal funding levels for Usher syndrome. Now you may be thinking ‘he doesn’t mean me. I didn’t do anything.’ But simply by reading this blog, you have done something to help. You’ve stayed engaged and by doing so, you’ve helped expand the Usher syndrome community. Whether you have Usher, are a family member of someone with Usher, are a researcher, a provider, a friend, or merely curious, you are increasing the number of people informed about Usher syndrome, if only by one.

That’s the definition of grassroots. It’s expanding your influence one person at a time. A person very experienced in Washington, DC recently paid us a very high compliment. He said our grassroots organization was tremendously impressive, even by the standards of much larger organizations. He said it usually takes years for much larger, better-financed groups to engage their grassroots organizations to the degree we have. We did it in months. That praise should be directed at you. Here are some of the things you might have done to help make this happen, from the simplest to the most complex.

Join our mailing list

Staying informed on the issues surrounding Usher syndrome is the most basic way you can help. This might sound silly, but it is actually the most critical step. Usher syndrome is a very difficult diagnosis. Many, many people find it difficult to stay engaged. It is common for the diagnosis to trigger depression and feelings of anxiety, not just in the person diagnosed, but also in family and friends. Depression and anxiety can make it difficult to function. Even simple tasks become very hard. Taking that first step of staying informed is often the most challenging. It’s also the most critical. There is no grassroots organization without you.

Follow us on Twitter and Facebook

This is easy but it helps. Washington, DC is well aware of social media these days. The number of followers a group has speaks to their influence and the power of their cause. Believe me, representatives have staff that look in to this. So if you follow us, thanks. You helped.

Likes and comments on posts and retweets

This takes a tiny bit more effort, but positive comments mean a lot. It is especially powerful when you explain how the content impacts you. Maybe you had similar experiences or derive hope from what you have read. Tell the world. Your opinions carry weight. It helps when you share them.

Join the Usher Syndrome Registry

As with Facebook followers, numbers matter. Going to Washington, DC with a registry full of families makes a big difference, particularly when we can answer prevalence questions. Basic statistics about Usher syndrome are there in the registry data. “How many people in my district have Usher syndrome?” is the most obvious question a representative can ask. Those numbers can only be found in the Usher syndrome registry, and the numbers only matter if you register.

Join the Usher Syndrome Family Network

Many families join the family network for their own benefit. They want to talk to someone with similar experiences. They want information. They want help. But in the process of communicating with other Usher families, they end up providing precisely what they are seeking. Those of you in the family network provide a tremendous service to Usher families. Just by trading e-mails, you help them through difficult times. You motivate them. You give them hope. And it is these hopeful, motivated families that are the key to our grassroots organization. So if you joined the family network, thank you. You have been a tremendous help.

Raise awareness about Usher syndrome

There are too many examples here to recite them, but every week I get a link to an article in a paper or a television story about a family with Usher. There are Usher men and women dedicating hours of their lives to telling their very personal stories in blogs or sharing their experiences with Usher through social media. People do bike rides and marathons and Spartan races to raise awareness. All of this helps. We still walk in to offices and have to explain Usher syndrome. We haven’t reached the point where it is common knowledge. But all of these efforts help move the needle. And they are great efforts, every one of them.

Contact your representative

Washington, DC does not make it easy to contact your representative, but making the effort to do so helps tremendously on a number of different levels. The most obvious is that it puts Usher syndrome on their radar. They know what it is and they know that one of their constituents deems it important. So when they read language about Usher syndrome, they perk up and pay attention. And your stories are incredible! They stick with your representatives. Usher syndrome may not be widely known but it is very memorable. Few people forget about it once they know about it.

But it’s more than that. It motivates others beyond the representatives. Take our Washington friend, the one who complimented our grassroots efforts. He has been helping us pro bono and he has been more and more energized by every contact you have made. Your efforts are infectious. It makes others want to help and that only accelerates the pace.

So if you’ve done any of these things I’ve listed, pat yourself on the back. 

You’ve made a difference. And if you haven’t done them yet, there is a still lot of time to get involved. We’ve made noise in Washington, DC this year, but it’s been that of a hummingbird’s wings. We’ve been a passing buzz that briefly drew attention and turned a few heads. We need to be more than that. We want to be impossible to ignore and you (and I do mean you) are the key to making that happen.

Thanks, as always, for your help.

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