Arnold Schwarzenegger recently filmed his latest action movie, Ten. In the movie, a DEA team raid a drug cartel safe house and are taken down by the bad guys, one at a time. It is due out in January, 2014.
But here’s the really interesting part: the drug cartel home in the movie belongs to the current President of the Board of Directors of FIRST, Mike Briggs. And I can guarantee that he is NOT a drug kingpin!! When he was originally approached about renting out his beautiful lakefront home in Georgia, he accepted the offer on the condition that the movie production team pay the rent that he would have received for filming rights not to him, but instead as a direct donation to the Foundation for Ichthyosis and Related Skin Types. Mike’s grandson, Adam, has epidermolytic ichthyosis. Adam’s mom was one of the first people I bonded with at our first conference together, as Adam and Cookie are very close in age. Their family, like ours, has been very active in promoting research and awareness and support for this rare disorder.
The producers of the movie not only agreed to forward the rent, but also added in a large donation of their own. Filming went forward through December and January, and at the end of January, FIRST received a check for $35,000! Mike was also interviewed on the WDUN Bill and Joel Morning Radio Show. (The link goes to the FIRST article. At the bottom is the audio from the radio interview.)
This isn’t just great news for the foundation. It is also great news for all families that are dealing with ichthyosis in their lives. This sort of awareness helps drive the conversation away from pointing, laughing and staring at pictures on the internet to real research, real cures, and most importantly, real understanding that we are regular people who happen to have an obscure disorder.