Shine Your Light: Conference Inspires and Connects

In late June, 364 members of the FIRST community gathered for the 2022 National Conference in Providence, RI.
The attendees included:

• 63 families with affected children
• 57 affected adults
• 29 medical professionals and researchers

More than 56 families were attending their first conference.

The three-day event included motivational keynote speakers, including Hunter Steinitz, a 27-year-old FIRST member affected with harlequin ichthyosis. Hunter spoke about the power of telling your story, for yourself, for others affected by ichthyosis, and for the world at large.

"The way that we change how the world sees us is by boldly telling our stories, sharing our experiences," she said. "Because if we don't, no one outside of this family will know what it is like."

Attendees broke into tracks or interest groups to learn more about products and care tips, types of ichthyosis, genetics, clinical trials and other topics. Groups for affected adults, young adults, mothers, fathers and grandparents offered opportunity to connect with and seek support from others.

In a spotlight session, Dr. Leonard Milstone shared about the intersection of his decades of work in ichthyosis research and the growth of FIRST.

While working on early studies of retinoids in the 1970's Milstone noted they were breaking ground in an unexpected way - the studies brought together, for the first time, physicians, patients and families connected by ichthyosis.  For physicians, "this meant that learning and teaching about ichthyosis moved from textbooks to a living reality," said Milstone. "Just as importantly, people with ichthyosis began meeting others who shared their practical, social and medical concerns."

This was the catalyst for the formation of the Ichthyosis Foundation - the organization now known as FIRST. Dr. Milstone has been a consistent presence from those early days to today, where he continues to serve on the Medical and Scientific Advisory Board and as an emeritus member of the Board of Directors.

Throughout the conference, it was apparent that the lights of individuals glow brightest when they shine together.

Several Conference Presentations are Available Here

Many thanks to FIRST's National Conference Sponsors