2010 Family Conference Highlights

Orlando, Florida  -  June 25-27,2010

Four hundred and three registrants gathered in Orlando to be a part of this fantastic event. Thanks to the sponsorship of the Vaseline Skin Fund®, 14 families attended the conference for the very first time. It was so heart-warming to see affected children meet other children with the same skin condition for the first time.

The conference weekend kicked off with a pre-conference meeting of ichthyosis researchers from around the world. Leading experts in ichthyosis research met to identify new opportunities for research collaboration.

On Friday morning, before kicking off, first-time participants had the opportunity to gather together and gain information from veteran conference attendees about how to make the most of their conference experience.

During the opening program, everyone participated in ice-breaker activities to get to know one another. This paved the way for strong friendships to be formed over the course of the weekend.

Child care was provided so that parents could attend the workshops and gain as much knowledge as possible. The children had a great time playing games. The older teens participated in a trip to Disney Quest on Saturday afternoon.

At the very beginning of the Child Care Camp, FIRST member Merritt Andrews arranged for a baby alligator from Gatorland to be brought to the conference. Merritt explained that many times children with ichthyosis are called “alligator skin” in addition to other cruel names. She wanted to give the children an opportunity to touch an alligator. Its skin is actually smooth! This will arm the children with clever retorts when faced with name-calling.

The weekend featured a broad array of workshops designed to help affected families with school issues, doctor/patient concerns, and skin care ideas. Break-outs for moms, dads, affected adults, spouses, and young adults, are always a popular feature at the conference, and provide individuals the opportunity to share encouragement and concerns with their peers.

Of course, the highlight of the conference is the Saturday night dinner dance, and this year was no exception. The excitement began with visits from Mickey Mouse and Cinderella, to the delight of every child, and some of the adults, in attendance. The 2nd Annual FIRST Idols Revue was a tremendous success with great performances by our aspiring singers and dancers. This year’s raffle, chaired once again by Jennifer See, was great and participants were excited to hear their names called when they won a prize.

FIRST President Dave Scholl presented the “Volunteer of the Year” awards. The 2008/2009 Volunteer of the Year award was presented to Jennifer See for the tremendous job with 2008 Family Conference Raffle (and this year’s raffle as well), coordinating a scrapbooking fundraiser, initiating and chairing the new Ambassador program, and being our “eyes and ears” on the internet, spreading the word about FIRST’s services.

The 2009/2010 Volunteer of the Year was Jolie Cina for her efforts hosting a wine tasting party, facilitating the “Pancakes for Santa” fundraiser, serving on the Marketing Committee, and most notably, connecting with Senator Richard Codey from New Jersey.  Her connection with Senator Codey facilitated legislation in the New Jersey legislature seeking additional funding for ichthyosis research.

Dave also presented the Frances Bernsteil Award recognizing outstanding efforts in Grassroots Fundraising.  Josh and Amie Jo DeGarmo were recognized for the golf tournament that they have organized for the past 4 years.  People in their community of Napa know all about ichthyosis because of the DeGarmos events which have raised more than $40,000 for FIRST.

Shelly and Lucas Trojanowski, while not present at the conference, were recognized with the Frances Bernsteil Award for their fund raising campaign mailing letters to family and friends, e-mailing friends and business associates, and cooking at lunch at their local deli called “Lunch for Lucas.”  Their campaign raised over $5,000 for FIRST for lamellar/CIE research.

After the awards, the dance party was in full swing. With a fantastic DJ, adults and children alike danced long into the night.

After lunch on Sunday, some participants reluctantly parted ways, while others stayed on to enjoy the Disneyworld attractions. Whether going home on Sunday or staying awhile longer, everyone left the conference armed with information, lotion samples, and life-long friendships and memories to take with them.
View the 2010 Conference Slideshow

Thank you to our 2010 Family Conference Sponsors

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