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.

Will W. - Mountain Lakes, NJ

I didn't know much about ichthyosis when we learned Will had this disease, but over the years both he and us have learned a lot about the disease how to care for him, and how to overcome some of the challenges it creates.

(Read Will's story)

Sarah and Alex - Bloomington, MN

Ichthyosis: A Family Story - Read the perspective of Sarah's mother, Sarah, and Sarah's son Alex.

(Read Sarah and Alex's story)

Christine - Albuquerque, NM

At the FIRST’s National Conference in San Diego, my doubts increased, but my determination to discover why my skin differed from most other people's skin remained strong.

(Read Christine's story)

Jelani - Raleigh, NC

Jelani, a member of FIRST, graduated from college in December with his eyes on an exciting future in his chosen field, Bioengineering.

(Read Jelani's story)

Ahmed - Yemen

What I can do is just to support my children how to deal with people teasing, laughing or walking away from them.

(Read Ahmed's story)


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


Story Archives: 2023, 2022, 2021, 2020, 2019, 2018, 2017, 2016, 2015, 2014, 2013, 2012, 2011, 2010 and prior

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