Friends With FOP

"Mom - how many more days til we go on the airplane to London?"  I hear this several times a day from both my kids.  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, and goes all day Saturday, capping off with a dinner on Saturday night.  Then, on Sunday we'll be having our first Canadian FOP Network annual general meeting. The CFOPN is our new-as-of-2008 Canadian FOP group.  It was formed by our President, Carrie Connell of London, Ontario.  ...

"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 it: FOP is being researched and gradually conquered, inch by treacherous, frustrating inch. The FOP Collaborative Project is a group of medical/scientific researchers who are putting their all into trying to understand FOP and design effective treatments for the disorder.  The heart of the group is ...

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 Resources.  Human Resources wasn't a thriving department at the company so it was gone well over a year ago.  Unfortunately there were a few people left in Marketing and a total of seven employees were laid off yesterday. At least we had a week to prepare ...

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 on Sunday morning, tune to KMPS and hear the interview.  We're hoping to get a copy of the recording.  If so we'll make sure we post it here. Starlight Children's Foundation Alan has blogged about Starlight Children's Foundation before.  Alan came across Starlight last summer shortly after ...

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.  This 8 day trip is one of the first he's taken in 2009, and I've noticed a difference about what it's been like in his absence.  Simply put, it's been easier this time than it was in the past. Of course, I miss Pete and want ...

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 remote chance vitamin D might have a helpful effect on FOP, and since D is touted these days as a substance with all kinds of health benefits, we figured we'd try it. So back to the blood test - I've known for a while that blood ...