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I’ve booked my tickets for a trip to Dallas, Texas to attend the FIRST Patient Support Forum on June 8. If you are in the Dallas area (or can make a trip out there), please join me at the conference! The featured speaker is Dr. Moise Levy, a member of FIRST’s Medical and Scientific Advisory [...] Summer is heading towards us in the Northern hemisphere. Some parts of the country are still enjoying (or not) snow, while down here in Virginia we have lovely 60-70 degree days with a lot of rain. But soon will come summer, and with it lots of 90+ days. Many kids with ichthyosis contend with thickened [...] 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 [...] Jennifer and I are very pleased that we are now able to extend a personal and public welcome/shout-out to Maureen Neville, who started work today as the Communications Director at FIRST, the Foundation for Ichthyosis and Related Skin Types. Maureen wrote a note introducing herself, which was published this morning on FIRST’s web page and [...] 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 [...] Our guest post today is by Shannon, mom to Lauren. Lauren is 8 years old and a Brownie Girl Scout. ————– “If there were no schools to take the children away from home part of the time, the insane asylums would be filled with mothers.” – Edgar W. Howe After three years of Early Intervention [...] Jennifer and I are sending this letter to a few selected friends and family members, asking them to consider donating to FIRST, the Foundation for Ichthyosis and Related Skin Types. A copy of our slightly edited letter is below; if our blog has spoken to you over the past few months, we hope you, too, [...] Alicia finishes her tale. Her son Efrain is 6 months old. ———————– Each day he was alive was a milestone. His wounds were healing and he was moist 90% of the time. The third week, they started to decrease the humidity level by 15% every three days. It was to get him used to breathing [...] (This post is available in English here.) Lo más destacado de la edición de esta semana es la historia de Soledad Atzompa, un pequeño pueblo de montaña en Veracruz, México, que tiene una enorme porción de la población afectada por la forma laminar de ARCI. Hemos escrito sobre como es posible esto en Inglés y [...] (Puede leer esto aquí en español.) The highlight of this week’s edition is the tale of Soledad Atzompa, a tiny mountain town in Veracruz, Mexico that has a huge portion of its population affected by the lamellar form of ARCI. We wrote about how that is possible in English and also in Spanish. In other [...] |
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