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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

This Month in Ichthyosis: 7/8/2013

We’ve been busy with a bit of a family vacation over the long weekend so blogging has been a bit light. But we wanted to call our readers’ attention to some must-read articles that have popped up.

Over the weekend, Carly had a run-in with a cab driver who refused her service because of her ichthyosis. (She also wrote a separate piece for Daily Life about her experience.) And yes, it’s amazingly ironic that the incident happened on a weekend during which Carly was giving a presentation about how having a visible difference has made her more resilient. Truth is stranger than fiction!

Australian media has picked up the story and she has filed a complaint. Of course, in the United States, discrimination in a public accommodation on account of having a disability (or perceptions of a disability) would violate the Americans With Disabilities Act. We previously blogged about a lawsuit (and the underlying law) against a restaurant in Michigan that refused service to a family on account of their skin disorder; the lawsuit settled in May.

An article published today talked about using social media to spread awareness and education for rare disorders.

Before the (U.S.) July 4th holiday, FIRST posted about Dr. Dennis Roop’s stem-cell research. (Jennifer and I previously blogged about Dr. Roop’s research.) Even if you’re familiar with Dr. Roop’s research, take a look at the FIRST blog post. They linked to a 5-minute Youtube video from the University of Colorado explaining Dr. Roop’s research. (The video features Adam Klafter, who many people will remember or recognize from prior FIRST events and videos.) It’s a great video that does a wonderful job of explaining why cutting-edge research like Dr. Roop’s research is so important, and it really puts a human face alongside what’s going on.

Finally, Jennifer and I are excited to be attending FIRST’s testimonial dinner for Dr. Amy Paller, being held in Milwaukee, Wisconsin this Friday, July 12. We’re also having lunch with some local affected families (and visitors) — if you’re in the Milwaukee area and would like to join us, drop us a line!

1 comment to This Month in Ichthyosis: 7/8/2013

  • Hello
    I’ve been meaning to stop here and thank you – this week has been crazy!!
    Thanks for linking up. I have put in three complaints to three orgs: the taxi company, taxi commission and human rights commission. I won’t make the outcome public yet.

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