Ichthyosis Awareness Month

May is Ichthyosis Awareness Month!

Click here to download this image.
Click here to download this image.


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, handing out educational information, or simply talking to neighbors, friends and community, about living with ichthyosis. And, if possible, raising funds for the ichthyosis community 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.






RAISE is FIRST’s new national online fundraising campaign encouraging people from all across the country to join together and raise awareness, funds, and hope for all those affected with ichthyosis. 

Plus, it’s so simple to participate.  FIRST provides a step-by-step guide on how to create your own personal RAISE donation weblink (with your photos, your videos, your story). So easy, you’ll be sharing it with family, friends, and friends of friends in just minutes!

IAM, is the perfect time to use your voice and join the cause! #RAISEFIRST

"It was so easy! All I did was add my name and goal. It's nice that FIRST provided a template to work from - it honestly doesn't even need much updating!"
~ FIRST member, Dede Fasciano

In fact, to date, 394 donors are helping 46 RAISE partners to raise over $27,000!

The campaign runs through July 3, 2015 and our goal is to raise $100,000!

“We believe in this campaign because FIRST is so critical to the new parents of an affected child! We would be so lost without this amazing organization. FIRST has educated us about the condition in layman's terms, and has connected us with others who "get" what it is like to live with this rare disorder” ~ FIRST Board Member, Tracie Pretak


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