Ichthyosis Awareness Month
May is Ichthyosis Awareness Month!
Be a part of the worldwide effort.
May is Ichthyosis Awareness Month (IAM). During May we encourage families and friends around the world to join together, use their voices, and raise awareness about the challenges and hopes of the ichthyosis community. Simply handing out educational information, or taking the time to talk to neighbors, friends, co-workers and community is one of the best ways to show you care about those affected with ichthyosis.
Looking for a way to celebrate Ichthyosis Awareness Month? Join FIRST's Walk for Ichthyosis!
$45,000! That is the goal for our Walk for Ichthyosis that can take place on any day that you choose! Walk for Ichthyosis is a walk that was created to achieve our mission; to improve lives and seek cures for those affected by ichthyosis or a related skin type. We would love to have EVERY state represented so we can reach our goal and get everyone involved in an exciting way. You can walk in your neighborhood, in the park, on your local track, at your school, anywhere you’d like! Don’t feel like walking? You could also create a virtual walk. Please contact Jasmine at email@example.com with any questions you may have, or to register as a walk coordinator or virtual walker. #Walk4ichthyosis.
All month long celebrate IAM
Week 1 - Support
- Walk by organizing or supporting a Walk for Ichthyosis near you.
- Plan your own grassroots fundraiser.
- Become a Regional Support Volunteer.
- Sign your 8-12 year old child up for the PenPal program by emailing Jill Domin at firstname.lastname@example.org
Week 2 - Educate
- Register for the 2018 National Conference.
- Participate in an upcoming FIRST to Know Call event.
- Raise your voice in FIRST’s Social Media or our Facebook Groups conversations.
- Learn more about managing ichthyosis
Week 3 - Advocate
- Ask your state Congressperson in the House of Representatives to support a proclamation supporting May as ichthyosis awareness month.
- Write to your United States Representative and inform them that you live in their district and you, or someone you love has ichthyosis or a related skin type.
- Visit your local congressional website and learn how and when to make local congressional visits.
- Share Your ichthyosis story and journey to inspire others.
Week 4 - Research
- Frequent the Research section of our website of all the latest research updates.
- Enroll in The National Registry for Ichthyosis & Related Skin Disorders patient registry
- Read about the studies funded through the Foundation’s Research Grant Program.
- Discover a clinical trial or study you can participate in.
Throughout the month of May consider supporting FIRST with a donation. Our programs, support and research can only continue with your monetary support.
Are You on Facebook? Twitter? Instagram?
IAM is Global! #ichthyosisawareness #FIRST #ichthyosis
Educating Your Local Community
Educating your local community is very important as it can make day-to-day life much easier for those affected. In addition to sharing your story on social media, 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 that May is dedicated to raising awareness for research of better treatments and cures.