Blog Archives

My 2016 Run4Rare Challenge

I’m excited about my 3rd year as a Run4Rare marathon runner!  This year, I am honored to be paired with the family of Grace Webster, a loving 8-year old girl with a strong spirit who died after a long struggle with Hypothalmic

Posted in Patient Stories, Running Stories

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: , , , , , , , , ,

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:

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

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: , , , ,

“March”-ing Through Together

While I often joke that the reason I am running the Boston Marathon is so I can buy one of the jackets, the real reason is I wanted to do that one final thing I had yet to do as

Posted in Patient Stories 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: ,

Living with MLD

    Hi, my name is Lindy and I’m a patient partner for this year’s Genzyme Running for Rare Disease Team. Lisa Valaika is my running partner.  I’d like to share with you what it’s like living with a rare

Posted in Patient Stories, Uncategorized Tagged with: , ,

Finding Strength in Weakness

Hi everyone,   My name is Chris and this is my first year being paired with a runner for Running For Rare Diseases. I am a 28-year old patient with Miyoshi Myopathy – a late-onset muscle disease, and currently live

Posted in Patient Stories Tagged with: ,

Selfless Stephanie

I will be running the Boston Marathon in memory of Stephanie Foster.  I want to share a little bit about what I’ve learned about Stephanie and the challenges she faced by having an undiagnosed disease.  For years, Stephanie battled a

Posted in Patient Stories

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