A record-breaking year for the FIRST National Conference-Nashville!

With 471 affected individuals and their family members attending, FIRST took over the Nashville Airport Marriot hotel in Nashville, Tennessee.  Adding the faculty and vendor participants, more than 500 people were in Nashville for FIRST's 20th Biennial National Conference. 

Conference participants met on Thursday evening at an informal Meet & Greet reception, where members of the 59 first-time attendee families were paired with returning families to help them navigate and make the most of their conference experience. With the official kick-off on Friday morning, Keynote Speaker, Andrea Avery moved everyone in the audience with her story, saying “Nothing helps you figure out who you are quite like a chronic, incurable disease.[...] The disease is not something you have to ‘get past’ to get to know me...it *is* me.” 

For the first-time, attendees heard from a panel of researchers and pharmaceuticals to better understand the clinical trial process.

Attendees were then treated to a second keynote speech by long-time FIRST member, Bailey Pretak.  Bailey's message-to be uniquely you-was a highlight of the weekend with many members inspired by her words.

Of course, all in attendance had the opportunity to meet with ichthyosis medical experts during the clinical screenings, and also had the opportunity to participate in the Yale Gene Discovery Project.

Before dinner on Saturday evening, conference attendees were treated to the talents, and very moving performances of the Release the Butterfly Tour Group.  During the Saturday evening dinner, dance and talent show, cowboy hats and bandanas were donned, which created a truly festive atmosphere.

The National Conference is a wonderful opportunity to meet, and ask questions of, ichthyosis medical experts, and also to connect with old friends, and create new friendships.  It's an opportunity to just be you and not face the stares and comments that are often a part of every day life with ichthyosis.  Participants are already talking about the 2020 conference.  Plans are beginning - stayed tuned for the announcement of the 2020 conference location this fall!

 

 

Check out the conference highlights here.

Thank you to our Conference Sponsors!

 
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