Date: 07/10/2024

FIRST staff, members, family, researchers, physicians and industry partners began arriving in Albuquerque, NM on Wednesday, June 26th, to prepare for the arrival of 317 participants at FIRST’s National Conference. Hotel Albuquerque at Old Town was selected as the venue this time and it did not disappoint.

This landmark Albuquerque luxury hotel is conveniently located in the heart of Old Town and the Sawmill District, offering accommodations and amenities, including on-site restaurant and bars, an outdoor resort swimming pool, and more than 62,000 square feet of indoor and outdoor meeting and event space. There were so many places to sit down and connect with new and old friends.

On Thursday, in the early afternoon, FIRST staff and numerous volunteers headed down to the Fireplace Room to assemble the generous product sample bags. The bags were stuffed with 12 different samples for our members to test out. Many gathered the extras and packed them away for their trip home.

Later, our event officially began with registration and a welcome reception, graciously hosted by BioCryst Pharmaceuticals (Netherton Research) in the QBar lounge. The reception was a great way for our members to connect with each other and to get ready for a few, very busy days ahead.

Friday morning began early with an offering of Yoga on the patio by FIRST member Mui Thomas who travelled all the way from Hong Kong. Registration continued and after a delicious southwest breakfast buffet, everyone was nervous and excited and gathered in the Franciscan ballroom to listen to opening remarks by FIRST Board Chair, Beth Hampshire and FIRST CEO, Chris Boynton. The opening keynote speaker was Alex Howard, from Slam Solutions, who discussed “Being Your Best Advocate”. This advocacy theme, along with many discussions about mental health, was a direct result of your feedback from prior conferences.

Afterwards, many members headed up to the 11th floor to participate in ichthyosis research. Throughout the conference, the kids were taken to the fun childcare room and everyone else broke out into a three track (Parents, Young Adults and Adults) offering of sessions with varying topics. These sessions were hosted by experts and by members of our community. Each session had time for questions and answers and they were quite lively.

In between the sessions there were delicious snack breaks and plenty of time for meeting others, sharing stories, asking questions and setting up times to meet. The conference app was available and made it so easy to connect, ask questions, suggest outside groups and more. All changes and announcements were made through the app so that everyone had up-to-the-minute information throughout the conference.

Later that afternoon, for the first time ever, we offered a Sound Bath, which provided for much needed relaxation. About 50 others boarded a bus to head over to the Isotopes baseball game, a Minor League Baseball team of the Pacific Coast League and the Triple-A affiliate of the Colorado Rockies.

Saturday morning began with another Yoga session, this time hosted by Sacha Schenker from Canada. At the same time, FIRST’s Board of Directors met to discuss the year ahead and Boehringer Ingelheim hosted a first-ever, Patient Advisory Board for Netherton Syndrome, hosted at a conference!

Throughout the conference, in the East Atrium, there was a display of over a dozen ichthyosis research posters. There was time to ask the researchers questions, but this display was the first of its kind at the conference. Thank you to FIRST member and PhD student, Stefanos Koutsoukos, for gathering and coordinating this effort. There was great feedback and we will continue to provide this display at future conferences.

Saturday continued with a whole host of sessions, including incredible talks from FIRST members Pierre Brault (speaker conference contest winner), Lowell Wright and FIRST member and movie maker Jonathan Green. There was something for everyone. The sessions included Life Stages, Types of Ichthyosis and compassionate sharing sessions for nine different groups later in the afternoon. There were awards announced during the delicious lunch, too.

Saturday evening began with cultural entertainment, Flamenco Guitar and dancing at the cocktail reception. This was followed by the Quoin Pharmaceutical sponsored dinner and was a very active night with more awards, a competitive fundraising opportunity (nearly $18,000 raised!), flashing lights, hats and lais. Several FIRST members shared their talents on the piano, with a microphone and Tae Kwon Do! The party went on until late that night, but so much fun was had by all.

On Sunday we wrapped up with “Ichthyosis Research Updates” and “Participating in Clinical Trials”. Box lunches were provided, then many hopped on the Beiersdorf sponsored airport shuttle to begin their trip back home.

Many stayed around and continued their journey on a tour of the southwest USA.

We are incredibly grateful for our generous sponsors of this conference, Beiersdorf ($75,000 in conference scholarships were awarded and the Airport shuttle, youth program and session recording funded), Boehringer-Ingelheim, Leo Timber, Azitra, BioCryst and Quoin. We were able to provide so much more because of their support.

We rely on your feedback to continue to improve each conference. Thank you to those of you who responded to the Post Conference Survey. 

FIRST Staff and the board will begin the process to select the location for the 2026 National Conference. Stay tuned!

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