When I was in America I was lucky enough to meet with Moureen, Mo and Lisa from the Foundation for Ichthyosis and Related Skin Types (FIRST).

DeDe and Evan came too!

FIRST supports patients and families affected by Ichthyosis – connecting people, providing information and assisting with research. They have some really useful support groups online – FIRST Adults, FIRST Young Adults and FIRST for Parents. Through these groups I’ve met some wonderful friends and shared my experience. Most of the friends I’ve met overseas were friends who have Ichthyosis – many are FIRST members.

FIRST is also sharing stories for Ichthyosis Awareness Month. And they’re running a selfie campaign for IAM – the “I Am” selfies. Here’s mine.

I am… A traveller, a writer, a fiancé, an appearance activist, not a sufferer, an optimist.

In June, there’s a conference in America that I’m sad to be missing. Read about it below.

The Moment

“Educate, Inspire, Connect: These are the words that are seen on every single piece of communications from FIRST. They are our mission, our goal, our guiding light. And although educating and inspiring our membership base is of the utmost importance, the idea that we are opening the doorway and inviting those affected with ichthyosis to walk through and make supportive, life-altering connections, is a true privilege.

In honor of Ichthyosis Awareness Month, we felt that there was no greater way to honor the lives of those affected with ichthyosis than to share, in their own words, how it felt the moment they reached out for the very first time to someone who really understood; to find someone who really cared and reached right back.

In fact, many of these moments occur before our very eyes at our signature event: The National Family Conference. This event is not only a long-time tradition of FIRST, but it represents the very essence of what we do. So during this month of May, dedicated to raising awareness, we not only encourage you to “connect” with each other, we invite you into the heart and soul of FIRST, as we share the moments that seem to stand out just a bit more than the rest…the moments of connection.”

May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.