Meet Our Families

What's Your Story? We'd Love to Hear It!

Here is your opportunity to get to know our truly remarkable families and share their inspiring stories.

Janan M. - Tel Aviv, Israel

I would like to share with you my experience living with ichthyosis.

(Read Janan's story.)

Denise G. - New Orleans, LA

Denise highlights the changes that her skin endures during the cold weather.

(Read Denise's story.)

Erin H. - Madison, MS

FIRST member Erin Halvorson talks about her serendipity and falling for the love of her life.
(Read Erin's story.)

Katie S. - Attleboro, MA

Katie S. - Attleboro, MA

FIRST member Katie Smith is more than excited to share her story. After all, it's not just a story about living with ichthyosis. Nor is it simply a story about an "aha" moment, or the journey of a young woman setting out to find her true purpose. To Katie, her life, her skin disorder, her future, are all a part of something bigger, not just a story, but "an obligation to do good in the world." (Read Katie's story.)

Daniel S. - New Cumberland, PA

Daniel S. - New Cumberland, PA

In 2014, the Saylor family of Pennsylvania adopted a baby boy affected with harlequin ichthyosis. Their journey from the very first moment they met Daniel, to today, where the happy one-year-old is making strides in his development, has been nothing less than amazing. (Read Daniel's story.)

Kenny K. - Glendora, NJ

Kenny K. - Glendora, NJ

Kenny was born in a small southern New Jersey town, Glendora, in 1970, a time period when very little was known about his skin condition (ARCI-lamellar type ichthyosis), and even less known about its treatment. His childhood, once depicted in a documentary entitled "Kenny", was admittedly not ideal, as he not only was singled out for his skin condition, but was also the child of divorce at a very early age. (Read Kenny's story)


There many more stories from our families.
Please click one of the links to the left for additional stories.

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