One of my favorite parts of the national conference is the ability to meet others who walk in our shoes and understand what our daily lives are like. I love being able to learn from other mothers and parents. I love being able to share my experiences as well. As a mother of a 17 and 14 year old, I am more of a veteran parent these days. When Portia was born, we knew nothing except what we read and what the dermatologists told us. What they couldn't tell us is how her life would go. Would she make friends? Would she go to college? Would she be able to wear a fancy dress and attend her prom? However, at our first conference in Chicago in 2008 we met a family that changed all of that for us. I met the Alba family at the Saturday night event. Lynne Alba and I became fast friends. I met her and her daughter, Brittany, who has CIE. As a mother of a daughter, I saw someone who I could share my concerns with. Lynne and Brittany assured me that Portia would attend her prom. They even showed me a picture of Brittany attending hers and looking so beautiful! Their kindness assured me Portia would be ok and could do whatever she wanted. It's something that I try to pay forward every time I meet a new parent. And just this June, Portia did attend her prom! She looked beautiful, had a great time getting dressed up and spending time with her friends. I couldn't be more proud!

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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.