Blog Archives

It All Came Together…

On April 16, 2016, the Running4Rare team came together for the first time as an independent entity working with the National Organization for Rare Disorders (NORD) and the Undiagnosed Diseases Network (UDN).  It was a very special evening for all

Posted in Patient Stories, Running Stories

Step change or Outlier

In 2015, as an experiment, the Running for Rare Diseases (Running4Rare) board decided to add the Providence Marathon and Half Marathon as an option to inspire the involvement of more employees.  Incredibly, not only were more employees interested, so were

Posted in Uncategorized

Songs, playlists, memories… forever

What if you had the opportunity to associate yourself with a song such that every time the song was played the listener envisioned your smiling face?    Over the past two years I have held ‘Playlist Fundraisers’ where co-workers, friends and family

Posted in Running Stories Tagged with: , , ,

I’m in!!

I run predominantly in the mornings, generally between 5 and 6am at a length of 6-10 miles each day during the week.  I choose the morning because this is my time; no meetings, no lost family time, and nothing else

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

CALLING ALL: Rare disease patient advocates who want to participate in a life-changing experience to raise awareness and funds for patients desperately seeking a diagnosis!

If you’re a rare disease patient or patient advocate who is passionate about helping patients with undiagnosed diseases, we have an opportunity for you! About the Running For Rare Diseases Marathon Team The Running for Rare Diseases Marathon Team has

Posted in Patient Stories

Tapering, Butterflies and Phantom Pains – What fun….. (edited repost from 2011)

It’s about a two weeks before race day and all of the team members are completing their first week of tapering.  One would think that getting more rest and running less miles would make a runner feel great.  The truth is tapering isn’t

Posted in Uncategorized

My Boston Marathon Goal: Let’s make it a Personal Best…But not a PR!

On April 21, I will be running my 8th Boston Marathon and my 17th marathon overall. I started in 2007, the year of the nor’easter that had the press asking if it could possibly be canceled due to the heavy

Posted in Uncategorized

Community, Resiliency and Changing the World

I was in AZ last weekend to participate in an event for TGen’s Center for Rare Childhood Disorders  and the Wylder Nation Foundation.   The event consisted of a tour of TGen’s research facility followed by a dinner with the employees

Posted in Patient Stories

Living a Happy Life – Sam Berns

On Friday, we lost Sam Berns,  a remarkable young man to Progeria .  Sam, age 17,  was diagnosed at 22 months of age with Progeria, a rare, fatal genetic condition characterized by an appearance of accelerated aging in children.   Children with

Posted in Uncategorized

We Did It!!!

Team Wylder Nation Race Report:  Ghost Train 100 Mile Endurance Race 10/26/13 – 9:00 AM From the top going clockwise…Kaitlyn, Lily, Riley, Amber, Faith, Quinn, Trek, Jacob & Wylder (center) I got up at 5:00 AM and went through my typical

Posted in Uncategorized

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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.

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