Rachel’s liveblog of the FIRST Dallas Regional conference is now starting. If the liveblog doesn’t appear below for you, you can click here to open it up in a new window.
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I will be liveblogging the FIRST Dallas Regional Conference on Saturday, June 8. The conference starts at 9:30 AM US Central Time (14:30 UTC/GMT, 15:30 BST, 0:30 6/9 AEST (sorry, Aussies)), so please join me here on the blog during the conference for live updates. You can submit questions for the presenters here on confettiskin.com. [...] More on this later, but I just wanted to report the great news that our friend Stephanie, who guest posted a few months ago about being the first woman ever to be pregnant while affected with harlequin ichthyosis, (the most severe form of ARCI), gave birth to her son this evening. She carried the pregnancy [...] We wrote today’s guest post for Carly’s Ichthyosis Awareness Month project. If you’re not directly connected with us on Facebook, you can see some (relatively) new family photos which we haven’t shared with our blog readers. If you’re just joining us, take a look at our recent posts about our family’s “Cherry Blossom Death March” [...] Our friend Hunter Steinitz has added another media appearance to her list — she appeared on the May 16, 2013 episode of Inside Edition. (Nitpick: Hunter is 19 years old, not 15, as stated in the caption.) On the show, Hunter shares some wonderful thoughts about her outlook on life. Hunter’s appeared in the media [...] Good news out of Michigan — there has been a settlement in the Justice Department’s lawsuit against a Golden Corral restaurant in Michigan that kicked out a family with three daughters who had a form of epidermolysis bullosa. According to a report published this afternoon by the Detroit Free Press, when announcing the settlement, Barbara [...] Welcome to May! This month is dedicated to raising awareness about ichthyosis. This looks to be one of the most active Ichthyosis Awareness Months ever! Here are the goings-on around town we’re aware of: FIRST, the Foundation for Ichthyosis and Related Skin Types, is publishing member stories throughout the month of May. The first “personal [...] Reading online today, we came across the story of Penny Loker, a lady with a birth defect, a malformed face condition called hemifacial microsomia, or in English, half-underdeveloped small face. Like families dealing with ichthyosis, her birth defect is obvious to a typical stranger in the store, and accordingly has led to stares, questions, bullying [...] The questions on our Reddit AMA today have pretty much stopped, which has given me some time to pull together some thoughts. First — a huge THANK YOU to Kyriaki. It was awesome doing this with you! My own pictures of my skin (foot, neck, hand, knee) have been viewed over 150,000 times today. And [...] 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 [...] |
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