Blog Archives

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

Posted in Uncategorized Tagged with: , , ,

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

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

Our “normal”

Being Rare……. Sometimes we look like everyone else, happy, busy people, socializing with friends, and helping others. Then sometimes we don’t. We wear masks to protect ourselves from others scent (strong odors/perfume). Wearing gloves at the playground. Stopping any activity

Posted in Uncategorized

Rare Disease Day at NIH

  Hi my name is Noah Maria Victoria and I am the patient part of Running for Rare Diseases. My wonderful partner is Jon Rayla !!!My parents and I recently participated in Rare Disease Day at NIH . We decided

Posted in Uncategorized

Running like a hamster

This is my first blog post, so please bear with me. I am so excited and proud to be running the Boston Marathon this year for the National Organization for Rare Disorders (NORD). The picture above is my view as

Posted in Uncategorized

You’re so vain, I’ll bet you think this post is about you

Cushing’s is a pretty brutal way of coming face-to-face with your vanity. Cushing’s syndrome is what happens if your body is exposed to excess cortisol. You can get Cushing’s by taking glucocorticoid medications (like Prednisone) for an extended period of

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.

Upcoming Events

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

    March 24 - May 18
  2. Bertucci’s Waltham Fundraising event

    March 26
  3. Homebrew Tasting – Austin

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

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

    April 10 @ 4:00 pm - 7:00 pm

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