Ichthyosis Awareness Month



May is Ichthyosis Awareness Month (IAM). During this month, we encourage our 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 aboutyour 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 mneville@firstskinfoundation.org.

Together, we can make a difference...


Blessed by Brenna


Our 'Young Warrior' Evan


   Tune Into Radio Carly


Confetti Skin, Beauty Within


* This information is provided as a medium for the free exchange of information.  Neither the Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST) its Board of Directors, its Medical Advisory Board, officers, nor staff endorse any treatments or products mentioned in any of the above-mentioned blogs.  Views and opinions expressed on the blogs do not necessarily reflect the views of the Foundation or Foundation officials.

If you would like to hand out an informational flyer about ichthyosis and FIRST, you may download it here!

Fundraising Ideas

Awareness Ideas
  • Auction
  • Bingo Night
  • Book Sale
  • Bake Sale
  • Candy Sale
  • Car Wash
  • Collection Jars
  • Dance                               
  • Donations in lieu of birthday gifts               
  • Garage Sale
  • Dress Down Day at work or school
  • Golf Tournament
  • Raffle
  • Skate-a-thon
  • Collection Can – with brochures
  • Distribute FIRST brochures in your community
  • Submit your personal story to a local newspaper, radio or TV station via their news tips hotline
  • Submit your personal story to your company newsletter
  • Send a letter to your local and state elected officials
  • Send a letter to members of the US Congress
  • Contact your local chapter of community service organizations (Lions, Kiwanis, Rotary, etc.) and offer to speak at a meeting





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