Board Spotlight...Brian Stern! 

When my daughter Bella was born in 2009, that was the first time we had ever heard of ichthyosis. And quickly, we found ourselves becoming experts on it. After doing tons of research and emailing with some folks in the community, we settled into our own little routine and found what worked for us. Years later, we saw a Facebook post about a Release the Butterfly Concert stop. The timing could not have been better. Bella had recently started saying things to us like, “you don’t know what it’s like. You don’t know how I feel.” And she was right. We had never met anyone in the community to this point. When we arrived at the event, we knew that God led us exactly where we needed to be, at the right time. We met some amazing people in the FIRST family, and some of them shared with Bella that they knew exactly how she felt. They hugged her and that was the start of a forever friendship. We started attending events and national conferences. We have also hosted several successful tour stops for the Release the Butterfly Concert tour. We have made many, many friendships over the years. During the national conference in San Diego, Tracie Pretak asked me to get involved on a deeper level with FIRST. Initially, I did not feel I had much to offer as I saw many of the incredible people on the Board. That led to continued discussions with Tracie, Mark Evans, and Jeff Hoerle.

I started test driving a few different committees until I found one where I fit right in and could have the greatest impact. I am the chair of the Foundation Development Committee (Fundraising). And I serve as the 1st Vice Chair of the Board of Directors. You may be feeling the same way I initially did. I challenge you to consider volunteering your time. Reach out to FIRST and express your interest in learning more. Ask for my contact info. I would love to chat with you and share about how much this journey has changed our lives for the better. And this is only the beginning. God blesses us as we are a blessing to others. We have our INCREDIBLE CEO Chris Boynton at the helm. He is an exceptional leader and brings a wealth of knowledge and experience. The future looks bright. There is no better time to jump in and help us to improve lives and seek cures for those affected by ichthyosis and related skin types. 

What's Your Story? We'd Love to Hear It!




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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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