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Children affected with ichthyosis start walking later than unaffected children. Based on responses collected from parents regarding 54 affected children, we are able to conclude that children affected with moderate to severe forms of ichthyosis start walking, on average, almost two months later than unaffected children. Approximately 40% of the children affected [...] Back in October, we had three posts discussing ichthyosis research recently funded by FIRST, the Foundation for Ichthyosis and Related Skin Types. FIRST began its Research Grant Program in 2006, and since then, has provided over $1.4 million in ichthyosis research funding. Our “Fall 2012″ issue of FIRST’s printed newsletter, Ichthyosis Focus, came in the [...] Over on Facebook last week, we had a lot of dialogue following our article about the revised ichthyosis nomenclature. We thought that addressing some of that dialogue would be useful here. (Among other things, that conversation occurred in a technically private group, so only members of the group are able to see it. And because [...] I’m limping around in (minor) pain today, but not for the usual reasons. Yesterday morning, I visited my favorite ichthyosis researcher for our sixth skin biopsy session. For a long time, when I was growing up, I really hated going to the doctor. And I reserved special disdain for new doctors taking a look at [...] The September 2012 “Research Times” mailing from FIRST, the Foundation for Ichthyosis and Related Skin Types, contained articles updating some ongoing ichthyosis-related research funded by FIRST. We previously blogged about the new award grant to Dr. Amy Paller at Northwestern University, for her siRNA gold nanoparticle research, and about the work of Dr. Heiko Traupe [...] This week, we tackled the basics of skin anatomy and reviewed a fascinating research project on making ARCI (lamellar-type) mouse models. Camp Wonder is a week-long camp available to children with skin disorders aged 6-18 in Oakland, California. It is completely free to attend, as it is hosted by a marvelous charity called the Children’s [...] Going through our postal mail this week, we saw a copy of the September 2012 “Research Times” newsletter from FIRST, the Foundation for Ichthyosis and Related Skin Types. In addition to reporting on the grant to Dr. Amy Paller for her siRNA gold nanoparticle research, which we previously blogged about, the newsletter [...] We were thrilled to see today’s announcement by FIRST, the Foundation for Ichthyosis and Related Skin Types, that FIRST has made a major research grant to Dr. Amy Paller at Northwestern University in Chicago. Since 2006, FIRST has contributed over $1.4 million to ichthyosis research. As part of the original purpose of our blog, we [...] We are currently aware of four separate research projects that are seeking people with ichthyosis to participate in their studies. These projects are Keith Choate’s Gene Discovery Project at Yale, Amy Paller’s Palmoplantar Keratoderma treatment with CD5789 study (sponsored by Galderma), the UK’s All Party Parliamentary Group on Skin survey, and the Harvard Hearing Loss [...] |
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