Own the Equinox: Grassroots II

August 13, 2015

by Mark Dunning

We have accomplished a lot in the last few years. Of all the things we have done, the fact we are considered one of the best grassroots organizations in Washington, DC might be the one that makes me most proud. Grassroots efforts require a whole community to be committed to a single cause, a single purpose. They take many, many people, each doing something. It doesn’t matter if an individual’s contribution is small or large. It’s the commitment to that collective effort that makes an impact. To be one of the best grassroots organizations speaks to how well we work together, how much we support each other, how dedicated we are. It is forever humbling to be involved, to see this grow, to watch what we are becoming.

The time has come for our grassroots efforts to become one globally. The Usher Syndrome Coalition represents families and researchers in at least 46 different countries. More are joining every week. We have wonderful groups around the world; in Australia and Austria, Ireland and the Netherlands, Sweden and Denmark and Canada and Spain and France and Germany and Mexico and every state in the US. We all have the same goals, the same dreams. We have all supported and helped each other. But we’ve never tried to pull off a single, targeted, coordinated, global project. And as I wrote earlier, this community seems to like a challenge. So let’s take on one more.

Let’s Own the Equinox on a global scale. Let’s make our Usher Syndrome Awareness Day span the world. You can help in ways big and small. We have a size that fits you and whatever you give will help.

Today’s technology gives us a great platform. Social media makes an impact. It can show scale and scope, document commitment. We want all of you, everyone in those 46 different countries and beyond, to contribute. We want you to be heard. The posts of the Usher Syndrome Coalition reach thousands of people now. Our record reach on Facebook was more than 10,000 people. Let’s double that. Our Twitter account has more than 500 followers. Let’s triple that.

Here’s how you can help us achieve those goals:

Start by sharing this post with everyone you know. Encourage them to help us Own the Equinox. All it takes is two thumbs and two minutes a day. Ask them to:

  1. Follow the Coalition on FacebookInstagram and Twitter! We will be curating and providing information leading up to Usher Syndrome Awareness Day!
  2. Share their story. We need as many people supporting the Usher Syndrome community as possible. Get on board and use social media to spread the word. Pull out your smartphones and join the conversation on Facebook, Instagram and Twitter. Every voice matters and every voice makes a difference.
  3. Use our Social Media Toolkit and Infographic to spread the word.
  4. Use the hashtag #USHEQX.

Little things make a big impact. We can change the global perception of Usher syndrome together, one step, one tweet, one person at a time. Let’s wake up on September 20th and find the world a different place, tipped closer than ever to a cure, because of us.

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