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A year ago, I was asked to bring my children to a medical meeting to participate in grand rounds. It was…unfulfilling, shall we say? Fast forward to January. In the course of starting this blog, we have met quite a few new families, and while I feel that I am pretty confident in answering general [...] Starting Monday morning, US time (7:00 AM EST – New York) and Monday night (9:00 PM ACST – central Australia), our friend Kyriaki will be joining us for an IAmA (I Am A ______, Ask Me Anything) on Reddit. We both have regular accounts there. She posts as CandlesandFish, and we post as ConfettiSkin, but [...] Last spring, our family participated in grand rounds at a regional dermatology meeting. The dermatologist running the grand rounds was our family dermatologist, but I also considered her friend due to our joint advocacy work. In addition to making the boys available to be examined, I prepared a 1-page sheet that discussed our type of [...] Last weekend, I attended the “Triangle Skinsational Sip”, a social event and fundraiser for FIRST, the Foundation for Ichthyosis and Related Skin Types, in Raleigh, North Carolina. The fundraiser was hosted by the Clemmer and Hedley families. The Hedleys’ teenage son is affected with KID Syndrome, and Ellen Clemmer and two of her three brothers [...] Joining us today is Christine Clakely, Executive Director of The Children’s Skin Disease Foundation (CSDF). Cookie has attended Camp Wonder for the past 3 years, and Monkey went for the first time last year. They have had a wonderful time and look forward to going back this summer. I would be happy to answer any [...] Today, Janine Mueller from the American Academy of Dermatology joins us to tell us about the summer camps offered to kids with ichthyosis, epidermolysis bullosa and several other skin conditions. Our son Cookie has gone to camp for the last 3 years, and Monkey joined him for the first time last year. They had the [...] |
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