Friends With FOP

posted by Suzanne The IFOPA sent out the following text in an email regarding the newly-established "Rare and Neglected Disease Caucus." "As part of our ongoing effort to reach our elected officials with the important message to increase attention to rare and neglected diseases, we wish to share this notice with you and encourage you to take action! U.S. Representatives Joseph Crowley (D-NY) and Fred Upton (R-MI) have formally announced the newly-established Rare and Neglected Diseases Caucus. As co-chairs of the Caucus, Crowley and Upton will focus on * Bringing Congressional attention to the 6,800 known rare diseases that currently have no approved therapies * ...

posted by Suzanne We use Starlight Foundation's Great Escape program all the time.  Once Erin was accepted with Starlight, we were added to an email distribution list that notifies parents of upcoming events.  So far this summer we have attended pre-screenings to movies, went to the University of Washington planetarium (which isn't open to the public), and attended a few festivals.  Yesterday's event was sponsored by C.A.S.T. for Kids (Catch A Sprecial Thrill).  It was by far our funnest event of the summer. C.A.S.T. is all over the United States and they put on events where disabled or disadvantaged children can fish ...

Posted by Karen I learned something interesting and useful this week.  I'll tell you what I learned, but first, will back up a few steps and set the stage for explaining it.  If you read my blog last week, you'll know that Miranda took a nasty fall several days ago.  She had been outside with her daycare group, and to make a long story short, she fell and scraped her nose and got a big gash on her forehead.  This was a fall on hard pavement, so we worried about a flare-up of her Fibrodysplasia Ossificans Progressiva.  In hopes of preventing a ...

I really need to get back into this blogging thing.  When Erin was diagnosed with Fibrodysplasia Ossificans Progressiva in June 2008, Alan and I felt like our child was the lone victim of this crippling disorder.  We were quickly proven wrong when we became members of IFOPA (International Fibrodyslpasia Ossificans Progressiva Association).  Still we felt that we needed to get the word out about FOP.  Although our efforts cannot be channeled through direct fundraising, we definitely can spread the word.  So here I am...Erin's mommy...making yet again another pledge to be better at blogging. So far our summer has been low-key.  ...

Posted by Karen Early this week, I got a phone call from the daycare - "Come pick Miranda up, she's had a fall and is crying!"  This is the first time this has happened in 2 years of daycare attendance, so I figured it must be serious.  When I arrived, I found a sobbing Miranda with a gash on her forehead, and a big scrape on her nose.  I took her home, cleaned her up, bandaged her and gave her a dose of Prednisone.  Prednisone is the only known drug which MAY prevent a flare-up of Miranda's Fibrodysplasia Ossificans Progressiva. It looked pretty bad, and ...

Posted by Karen My husband Pete and I are strong believers in vaccination.  And so, when Miranda was a baby, we got her all the recommended shots and boosters and so forth.  Every one of these shots was given intra-muscularly ("IM"), and none of them (fortunately) caused any problems. At age 2 years, 3 months, however, Miranda was diagnosed with Fibrodysplasia Ossificans Progressiva.  One of the many things we were told in the early days was to avoid IM injections for her.  The reason for this proscription is that injecting a needle into a muscle causes trauma to the muscle, and thus causes a distinct ...

Posted by Karen In honour of Canada Day on July 1, a Thursday this year, our family took the opportunity for a four day weekend.  Ah bliss, four days of sleeping in... ;-)  As it happens, this will also be a long weekend for Americans because of Sunday, July 4, Independence Day. Our family is both Canadian and American (Pete and I are dual citizens; I was born in USA to Canadian parents, and Pete was the reverse), so we can legitimately celebrate both days.  To my way of thinking, celebrating your country's national day is a very appropriate time for thinking about all ...