Nerves

This is not about running. I don’t know how many times we’ve said that, and I feel like I am a prime example, because there’s no way I would do this if it was about running. I do it because

Posted in Running Stories 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: ,

Those Silent Tears #9

March 18, 2015-It’s hard to imagine that in just a few short weeks, it will be the four-year anniversary of being diagnosed and the nine-year anniversary of my entire world being rocked.  It had been a five-year span of multiple diagnoses and toxic

Posted in Uncategorized

Howdy from Austin!

I’m Melissa, the resident blogger for the Emerson Austin team. This is the first time that our company has participated with Genzyme and New England Controls in Running for Rare Diseases.  Our team is made up of 11 runners (well

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Thank you and Happy St. Patty’s Day

  Hi, I want to wish you all a Happy St. Patty’s Day and thank you all for Running for Rare Disease, especially my running partner Lisa V! It took six years before anyone knew what was wrong with me.

Posted in Uncategorized

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

Posted in Uncategorized

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: ,

Garrett the Grand – Batten Fighter

Hello Runners and Patient Partners, My name is Nancy Coyne and my son is Garrett Coyne, age 4.  Garrett is paired with Zeb Jones who is running the Boston Marathon!  So who do I talk about first, Garrett or Zeb?! Well

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: , , ,

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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. RFRD Raffle: Catered Dinner for 10 – $1,500-$2,000 value!

    March 24 - May 18
  2. Homebrew Tasting – Austin

    March 28 @ 1:00 pm - 5:00 pm
  3. Wine Tasting for a Rare Cause

    April 4 @ 3:00 pm - 5:00 pm
  4. Spring Fling – Austin

    April 10 @ 4:00 pm - 7:00 pm
  5. Playing for Rare Diseases

    April 11

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