Friends With FOP

I was so worried about our flight that I was pleasantly surprise on how seamless it all went.  I took Steve Eichner's advice.  Erin and I pre-boarded with about five others.  We were the only ones who were not senior citizens.  I immediately saw the concern on their faces when we approached the pre-boarding area.  We were the third in line to board.   The lady behind me was talking to her companion and said that she wanted a particular seat.  I made a point to talk loud (not too hard for me) and said to Erin how much fun it ...

Karen Munro from Canada whose three year old daughter has FOP, read in their national newspaper of a Japanese invention that is being targeted to the growing number of elderly in Japan.  It's a portable airbag system that is worn as a vest.  Other people in the FOP community have seen the device demonstrated in the  media.  I found this video on YouTube.  Currently the device protects a person when falling backwards.  Unfortunately at this time the manufacturer does not have a design for those who fall forwards. Japan Invents the People Airbag Erin's bicep is swelling.  I am hoping the Prednisone ...

Steve Eichner posted a link to the FOPonline group about new legislation being introduced.  S.1810 is an amendment to the Public Health Service Act.  It's called, The Prenatally and Postnatally Diagnosed Conditions Awareness Act. The legislation is to allocate 5 million dollars per year from 2008 until 2012 to "increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome" (www.washingtonwatch.com).   Steve said that although the legislation specifically mentions Down Syndrome, it could be interpreted to impact FOP as well.  http://www.washingtonwatch.com/bills/show/110_SN_1810.html.