Denver, Colorado  -  June 22-24, 2012

FIRST’s 17th Biennial National Family Conference was held in Denver, Colorado over the weekend of June 22-24. More than 300 people representing 102 families, from 35 states and seven countries participated in the weekend events, highlighted by the Disorders Of Keratinization Project conducted by Dr. Keith Choate and the Yale University team. The goals of this study are to identify the genetic causes of ichthyosis and to understand how mutations cause skin disease. The Yale team enrolled 84 conference participants in the study, which took place all day on Friday of the conference weekend.

Registrants from as far as Australia, Ireland, and Zambia checked in on Friday morning and had the opportunity to see the friends that they haven’t seen since the Orlando Conference, renew old friendships, and make new connections. The conference activities kicked off with the Opening Session. Veteran conference attendees shared their experiences with the crowd, almost half of which were first-time conference attendees. They offered information and ideas for what to expect over the course of the weekend. The atmosphere was then relaxed while everyone participated in an ice-breaker activity to help people get to know each other. After lunch, participants enjoyed workshops about lotion tips, navigating the school system, and a highlight, a workshop on diet, nutrition and exercise facilitated by long-time FIRST member and conference veteran Paula Heinzman Ryan.

This conference has been an excellent opportunity to learn more and meet new people. It has really been an awesome experience.

After enjoying a Friday evening on their own to see Denver or just relax, everyone was back together Saturday morning to hear the latest on the gene discoveries and research that are taking place at Yale University.  Drs. Leonard Milstone and Keith Choate shared the exciting work being done by the group of researchers at Yale. Attendees then learned of grassroots fundraising opportunities from a panel of volunteers active with FIRST and veteran grassroots coordinators.

After lunch, registrants took part in more workshops, had the opportunity to ask questions from members of FIRST’s knowledgeable Medical & Scientific Advisory Board, and shared their experiences during the group networking sessions.

During Saturday afternoon, the teens were treated to a field trip to Denver’s Museum of Nature and Science. They enjoyed the lizards and snakes exhibit, the exhibits of Africa, Australia, and many other regions, the Mummy exhibit, the Dinosaur exhibit, a Tornado Alley movie in the IMAX theater, and the black hole presentation in the planetarium.

Once again, the highlight of the weekend was the Saturday night dance party. This year’s party was, without a doubt, the best one yet.  Each year, more and more youngsters show their courage and share their talents with the audience. With wonderful performances from Ema H. Abigail M., Rylee I., and her friends, Portia C., Aklya F., Treasure W., and Sama M., our children showed their talents and their wonderful spirit. Taylor W. rocked the house with a wonderful performance of Bound to You by Christina Aguilera from the movie Burlesque. Grace R. answered the audience demands and performed an astounding rendition of Beautiful that brought the crowd to its feet. Everyone danced, played games, and eagerly anticipated hearing their names for the raffle drawings. One and all had such a great time that they lingered in the ballroom long after the DJ left, for no one was ready for the evening to end.

Fantastic! Thank you so much. This conference was truly incredible and inspiring.

The conference ended on Sunday afternoon after disease-type workshops and focus groups. Everyone gathered over lunch to reminisce about the weekend, share phone numbers and emails, promise to keep connected, and look forward to seeing each other again in 2014.

The powerful emotions and the strong bonds that were created will last a lifetime.


Thank you to our Conference Sponsors

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