“Mom - how many more days til we go on the airplane to London?”  I hear this several times a day from both my kids.Â
Miranda and Owen are excited because on Thursday of this week, we’ll be flying to London, Ontario to attend the first ever Canadian FOP Conference and Family Meeting.  The conference begins Friday night, [...]

“Better treatments for FOP are not just a dream - they are now likely, and a cure is a distinct possibility.”  - The Eighteenth Annual Report of the Fibrodysplasia Ossificans Progressiva (FOP) Collaborative Project, page 64.
There are lots of terrible things about FOP.  However, as rare diseases go, there’s one really, really good thing about [...]

Steve McGraw from the Starlight Children’s Foundation invited me to help him with a radio spot that features his charity organization. The piece focuses on what the Starlight Foundation does for families with chronically ill children. I was there to share Erin’s story, how it has affected our family, and how the Starlight [...]

Well, it finally happened…Alan’s department was let go yesterday.  All last week, the remaining executive employees were in closed door meetings.  Word got out that the company did not have enough funds to survive through the end of June.  Apparently with “start up” companies, the first two departments to be axed is Marketing and Human [...]

Starlight Children’s Foundation of  WA asked for a family to accompany the executive director, Steve McGraw in an interview for “Good In Your Neighborhood.”  It’s a public affairs show that airs on Sundays from 6AM - 7AM.  Steve and Alan will be taping the interview this Thursday morning.  So if you’re up bright and early [...]

My husband, Pete, is out of town on business right now.  So, I’ve been solo parenting this week.
Pete has to periodically take trips out of town for a few days each.  This time he happens to be in Alaska…  His trips typically take a break during winter, and then start up again in the spring.  [...]

On Friday I took Miranda for a blood test.  It was, ahem, a bit of an adventure…
First let me say that Miranda isn’t sick.  She needs the test to get a base-line reading of her blood chemistry before beginning a regime of high doses of vitamin D.  One of her doctors theorizes that there’s a [...]