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Friends With FOP

Summer 2015 – ahhhh….

May 17, 2023 thaiphan

Let’s start by going back to a post I did a few weeks ago, wherein

Friends With FOP

What’s an IEP?

May 17, 2023 thaiphan

When you become a parent of a child with special needs, there’s a whole lot

Friends With FOP

What is a “natural history study”?

May 17, 2023 thaiphan

As I’ve said about a gazillion times on this blog, the thing I want more

Friends With FOP

Independence

May 17, 2023 thaiphan

My daughter is now a pre-teen. I guess that starts around age 9, and she’s

Friends With FOP

Research, and pushing for more of it

May 17, 2023 thaiphan

Every year I really looking forward to reading the annual report of the Fibrodysplasia Ossificans

Friends With FOP

Sleepover with the Girl Guides

May 17, 2023 thaiphan

I am unbelievably tired right now – but I guess staying up ALL NIGHT will

Friends With FOP

Mother’s Day for moms of kids with FOP (and other special needs)

May 17, 2023 thaiphan

Today is Mother’s Day, which explains why I’m a bit later than usual at writing

Friends With FOP

Treatment vs. cure? We’ll take either…

May 17, 2023 thaiphan

As you may know, there is currently neither a cure nor a consistently effective treatment

Friends With FOP

Rare Finds, a fabulous gala

May 17, 2023 thaiphan

Last night my husband and I went to the 6th annual “Rare Finds” fundraiser event

Friends With FOP

8th anniversary of FOP in our world

May 17, 2023 thaiphan

Eight years ago today, everything changed for our family. That was the day we found

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  • Miranda’s Halloween – new challenges
  • November at our house
  • San Francisco family conference
  • Miranda is now 13 (a teenager, GASP)
  • Yep, that’s high school there in the distance
  • February and FOP at our house
  • A wheelchair is not confining
  • An experiment in letting go (a little bit)
  • New equipment at our house – summer 2017
  • FOP family meetings are great
  • The path to accessibility
  • Stomach problems… Wait, what?
  • Reactions to the wheelchair
  • We did the Walk 2017!
  • A visit with our friend Erin

Friends With FOP

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