A couple of weeks ago I realized Miranda had outgrown her shoes. It was time for new ones!  I set off to the mall to try and find her some…
Ever since Miranda was old enough to need shoes, I’ve had to buy her footwear with a wide toe case. When she was very [...]

“Miranda, I’ll play stuffy toys with you if you play superheroes with me.” 7 year old Owen bargains with Miranda, trying to come up with an angle that will interest his 4 year old sister. Depending on her mood, she either jumps up and shouts her agreement, or else tries to bargain for [...]

This week has been a long week.  The daycare has been hopping all week.  In addition to, Erin’s preschool didn’t have school on Wednesday and Thursday for parent conferences.  She loves going to school but she also loves to play with the daycare kids.  She has enjoyed her short school week.  Today is a teacher [...]

Many days, Miranda’s FOP fades into the background.  Yes, we have to be careful, and do a few things differently, but most of the time we just think about Miranda and don’t focus on FOP.  Today, however, was not one of those days…
Today was a day for dealing with things related to Fibrodysplasia Ossificans Progressiva.  First, it [...]

Many FOP patients and families were overjoyed to hear the official announcement that President Obama reversed the federal government’s stance regarding funding embryonic stem cell research.  Although the amount of money that the government could provide for research is unknown at this time, at least the door has reopened.  This certainly does not mean we’ll [...]

Today I took Miranda to our local pool, which she calls going for “swimming lessons”. She sees her brother Owen go there for lessons, so I think that’s why she refers to the pool as swimming lessons. Miranda LOVES the pool, and I want to encourage her in the water, because swimming is [...]

The IFOPA has published a series of videos with Dr. Frederick Kaplan and Dr. Eileen Shore.  Each segment ranges from little over a minute long up to eight minutes.  They are an excellent source of information for FOP patients, families, and caregivers.  We have them here on the website.  They are in the tab to the right called [...]

I have a surplus of IFOPA merchandise that I need to send back to the IFOPA office in Orlando, FL.  Instead of mailing it back I thought I would sell the merchandise here.  Here is what I have available:
Adult size IFOPA t-shirts - Small (34 - 36), Medium (38 - 40),  Large (42-44) for $10 [...]

As promised, here’s the video of Mystery Diagnosis: The Girl Who Couldn’t Move that aired on Discovery Health Channel on March 2, 2009 at 10:00 pm EST.

Here is the commercial on Discovery Health Channel about the Mystery Diagnosis episode “The Girl Who Couldn’t Move”.  The episode airs Monday at 10pm Eastern.
It’s quick, but you can see the pictures of Erin’s toes and her back in the commercial.  Her toes appear at the 0:04 second mark, and her back is at the [...]