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

……..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

Posted in Uncategorized

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

Posted in Uncategorized

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: , , , ,

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Welcome to Running for Rare Diseases

Marathon runners dedicated to making a positive impact on the lives of people with serious diseases have teamed up with NORD to make a difference. Click here for more info.

Upcoming Events

  1. Providence Marathon

    May 3 @ 8:00 am - 5:00 pm

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