Blog Archives

Phil’s Friend

Greetings from your RFRD team member in the Mountain Time Zone. I am Justin but better known as Garrett’s dad in many circles, including the RFRD crew. Garrett has the honor of being Phil Maderia’s patient partner this year.   When

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Wow! How do I say thank you!

It’s hard to believe as I sit here in Oregon experiencing a rare 80 degree day that one week ago today I was at milepost 14.5 in pouring rain experiencing my first marathon and waiting for my partner Lisa to come

Posted in Patient Stories, Running Stories, Uncategorized Tagged with: , , , , , , , , ,

One Person

Several years ago my husband and I went to the JFK Library.  As you leave the museum they shuffle you through the gift shop, like all museums do.  As we wandered through the store I saw this magnet. Today this

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An open letter to my runner, Maureen

An open letter to my runner, Maureen It was a bitter cold day, snow swirls everywhere. Not the pretty snow, but the angry snow that pelts your face like buckshot. Get out there and shovel a little path, just from

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Year of Change; 3rd yr Patient Partner (MPS I)

This has been a really difficult post to write though I can’t really say why!? I went back and was reading Anne Burtenshaw (and her husband Ed) entries from the last 2 years and realized I just needed to stop

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Purple Tape

5 mins before I was due to leave for the recent 21 mile charity run the watch band on my Garmin broke. After dragging my husband (who can usually fix anything) out of bed at 6am to look at it

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……..Everything that comes from LOVE is a miracle

We had been trying to have children for almost 10 years and finally after 7 losses we were blessed with a beautiful baby girl named Noah Maria. She decided to come early no matter what the consequences would be to

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Motivation Monday – 6 Rules of Success

I’m constantly looking for motivation wherever I can find it. After this winter, I was digging really deep. My husband found this speech by Arnold Schwarzenegger and when he wanted me to watch it I thought “really? How is he

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Seizures Won’t Stop Me

April is almost here and I couldn’t be more excited! Soon I will be at the Boston Marathon cheering on my running partner, Lisa V! She’s there today participating in the Charity Run. Many of you probably don’t know that

Posted in Patient Stories, Uncategorized Tagged with: , , , ,

Challenge Accepted and Met!

    My name is Kelly and I am Bug’s Mom.  I want to share our experience so far… The search for a diagnosis for a rare disease is much like running I suspect. You run a bit each day,

Posted in Patient Stories, Uncategorized Tagged with: ,

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