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

Posted in Uncategorized

#WeRunTogether from Boston to Paris

Watch the video story about Running for Rare Diseases Team coming to Paris.  For over two years now, Emma and I have pursued a “We Run Together” campaign, running many miles together virtually. This includes during last year’s Boston Marathon,

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

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: , , , , , , , , ,

The Positive Impact of Patient Partners during the Boston Marathon

Yesterday, our team completed the first of two marathons along the Running for Rare Disease journey this year. The Boston Marathon is the super bowl of marathons. The one every marathon runner aspires to tackle. We were lucky enough to

Posted in Running Stories

Boston For Bertrand

Where has the year gone?  How can it be that the Boston Marathon is 3 days from now?  Have I done enough training?  Am I ready?!  Do I have all activities covered for the kids?  I need to pack…finish work

Posted in Patient Stories 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

Posted in Uncategorized Tagged with: ,

RFRD Online Auction is Up!

The Running for Rare Diseases online auction is NOW LIVE and will close at 12:59:59 on Friday, May 1, 2015. Access the auction here:  http://auction.runningforrarediseases.org/ There are already approximately 40 items – everything from original artwork and Patriot’s tickets to restaurant and

Posted in Patient Stories, Running Stories

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

Posted in Uncategorized

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

Posted in Uncategorized

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

Posted in Uncategorized

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