Things are ramping up for FIRST’s 2014 Family Conference in Indianapolis, from June 20-22. FIRST published some new Youtube videos — there’s a long version and a short version — where parents and other affected folks and some of the medical professionals talk about why you should attend (and what to expect). If you haven’t seen it yet, it’s definitely worth the time to check out. We will definitely be in Indianapolis, and here’s why. We hope to see you there, too!
And just yesterday, on the FIRST blog, there was a post from Tracie Pretak and her daughter Bailey about their experience — and inspiration — at prior conferences. Make sure you check out Bailey’s video, too.
Back in November, FIRST took a trip up to Yale to meet with the research team up there, and during the holidays, FIRST published a long writeup about their visit to Yale. In addition to interviews with and pictures of the team, there are also some comments from the patients, including from our friend De Fasciano about her son Evan, who’s affected with harlequin ichthyosis, the most severe form of autosomal recessive congenital ichthyosis (ARCI). (De blogged about her interview, too.) I know our own family was very busy when this article was first published, and we almost missed it amidst our own holiday scramble.
On the more technical side of things, we thought there were some other noteworthy posts on the FIRST blog. Back before Thanksgiving, FIRST wrote about a paper published by one of the Yale researchers, Dr. Britt Craiglow, regarding the use of tazarotene (also known as Tazorac and other names) to treat ectropion, the failure of the eyes to close due to the skin pulling on the lower lid. Dr. Craiglow’s paper was published in the May 2013 issue of JAMA Dermatology (formerly known as Archives of Dermatology) (PubMed link).
FIRST also published a survey about how lamellar ichthyosis affects patients’ and parents’ lives. The survey was done in conjunction with Galderma, a pharmaceutical company we know best as the makers of Cetaphil.*
On the social media front, FIRST has set up Facebook groups for parents of affected children, affected adults, and others. The parents’ group has quite a bit of activity. Contact a current member to be added.
We encourage all members of the “ichthyosis family” to follow FIRST’s blog and its presence on Facebook, Youtube, and elsewhere. There’s a lot of great information there!
* Our kids attended Camp Wonder, which Galderma also sponsors, and as part of our participation there, Galderma sent us a case of Cetaphil.