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#USH2014 - Road to the Symposium

May 19, 2014

by Krista Vasi

Social media is a powerful tool, giving voice to a community that might otherwise go unheard. As Mark mentioned, we are starting to build attention, but we need to do more. We are the murmur of a hummingbird’s wings, but we need to be a roar.

In just under two months, we will be making history. From July 10-12th the Harvard Medical School’s Joseph B. Martin Conference will open its doors for the 2014 International Symposium on Usher Syndrome and Family Conference. This means that the world’s leading Usher syndrome experts and researchers will meet face-to-face with the families they work tirelessly to treat.

This historic gathering provides a unique chance to grow our online community and to raise awareness about this not-so-rare syndrome. Join our digital efforts for #USH2014 – Road to the Symposium. We need your help!

Our Community Goals leading up to #USH2014

  • Increase our email list to 1200 connections.
  • Grow our Facebook community to 800 fans.
  • Educate supporters about the Symposium and Family Conference.
  • Recruit new messengers and advocates to the Usher syndrome community.

Our Community Landscape Today

  • The Coalition’s email list reaches over 1,000 Usher individuals, families and experts.
  • The Family Network connects 250 families from 17 countries.
  • The Registry aligns 506 registrants from 29 countries with the latest treatment advances.
  • Our Facebook community links 724 fans.
  • Our Twitter feed engages 254 followers.

How Our Community Can Help!

  • Follow us on Twitter: We are dedicating our Twitter feed (@UsherCoalition) to the Symposium and Family Conference (hereby dubbed #USH2014). We will be tweeting exclusively about the event: who will be there, what you can expect and why you shouldn't miss it. Join the conversation and use #USH2014 in your tweets!
  • Like us on Facebook: Encourage your friends and family to like us, too. We will be sharing regular, relevant information about the latest research and efforts within the Usher syndrome community. Our goal is to grow our Facebook community to 800 fans in time for #USH2014 and we need your help to spread our message far and wide.
  • Join our mailing list: This is one of the best ways to stay informed about what the Usher Syndrome Coalition is up to. Our efforts on Capitol Hill, monthly researcher calls, new blog posts, Registry news, Symposium updates – we’ll keep you posted about it all through our regular emails.

There are only 50 days until #USH2014. That’s 800 waking hours to like, tweet, share, follow and email with us. With your help, we will embolden more messengers, engage the uninformed and enroll allies in this journey. We will make our voice louder, more clear and impossible to ignore.

Road trip, anyone?

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