#IchthyosisAwarenessMonth: Share Your Story, Educate Your Community, Share Online

May 15, 2014

May is Ichthyosis Awareness Month (IAM). During this month, the FIRST Foundation encourage families and friends to raise awareness about ichthyosis by hosting grassroots events in their local community and, if possible, raise funds for ichthyosis and FIRST programs.

Educating your local community is very important as it can make day-to-day life much easier for those affected.  One of the easiest ways to spread the word in your community is to do an interview for your local newspaper and share your personal story. Or, contact a local radio station and let them know you or a family member has a rare skin disorder and May is dedicated to raising awareness for research of better treatments and cures. Click this link for some more great tips for approaching local media and making your event the best it can be.

WHAT’S YOUR STORY? We’ll be sharing member stories all month long! Tell us about your life with ichthyosis in 500 words or less (pictures would also be great!). Maybe you’ve had a particular challenge, or maybe there’s been a special day, a special someone, or an “aha” moment you’d like to share. We’d love to hear about it– and so would other members!  For members who are more inclined to videotape, than write, tell us your story on video like Bailey!

For directions on how to submit a brief video contact: Maureen Neville [email protected].

Download and share our communications material: IAM is a time for the entire ichthyosis community to unite together and collectively raise our voices for the hope of better treatments and better tomorrow.  And to strengthen our message, this year we are sharing downloadable IAM branding logos and graphics that can be used online or in printed materials.  This united “IAM brand” will strengthen our message, increase our presence, in both the media and the community, and help us to stand up for a cause so near to our hearts.

We encourage you to use these materials on Facebook, Twitter, Pinterest, blogs, websites, flyers, press releases, event signage, or wherever you’ll be participating in IAM, throughout the entire month of May…using the hashtag #IchthyosisAwarenessMonth with all of your posts

Use the IAM 2014 logo, email banner and facebook cover when promoting Ichthyosis Awareness Month.  Just right-click on the image to save it as a jpg file that you can use with your promotions…don’t forget to include the hashtag #IchthyosisAwarenessMonth!

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