Blog Archives

Never Thought I’d Become a Marathoner, But Here I Am

484924_3503116341366_947863354_n

Hey all! First of all, thank you for taking the time to give me a few minutes of your time to discuss my marathon training and my Community Partner, Tara Notrica. My name is Kaitlin Bartlett, I’m 29 years old

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

Life is More than just a Marathon

A lot of us in the Rare Disease world refer to the ups and downs of the diagnosis (or hunt for a diagnosis) as being a marathon. This weekend, I discovered that our life is far more than just a

Posted in Uncategorized

RACE COMPLETED

The 2016 Boston Marathon was pure misery: My feet hurt, my knees hurt, and with the gels I was taking during the run, my reflux was acting up, so my chest hurt and I felt nauseated for almost the entire

Posted in Uncategorized

“I can’t believe this is really happening…”

Those are the words I managed to mumble to Dan Wilkens, my Running for Rare partner, around mile 12.5 last year; I couldn’t believe I was about to complete my first Half Marathon. A few minutes later, Dan grabbed my

Posted in Uncategorized

Shauna and her rare disease – Rothmund-Thomson Syndrome

Shauna's first RFRD Marathon

I’d like to start with a heartfelt Thank You to the Running For Rare runners, patient partners, volunteers, NORD, UDN and everyone else who is involved in this community. Our family has made so many friends and bonds in these

Posted in Uncategorized

Being Resilient and Happy

I am so honored and excited to be running in the 2016 Boston Marathon to raise money for NORD. My patient partner this year is Sarah who is diagnosed with fibromuscular dysplasia. As we’ve gotten to know each other, I’ve been inspired

Posted in Uncategorized

It starts

Last Monday, I participated in the Sanofi Genzyme Running for Rare Disease Day Relay. I ran from my Westborough, MA office building to the Framingham site. The run was 6.9 miles; the longest run of my training for the May

Posted in Uncategorized

Getting to the Finish

17 Miles. That is what I ran today. The longest and by far the most difficult run I have had to date. The first 15 miles went well despite the single digit temperatures and the wind chill that brought the

Posted in Uncategorized

Staying Focused

This week I missed 5 days of training in a row due a to combination of factors – work, being tired, Run4Rare fundraising, kids waking up in the night, and just not feeling like getting up early. I don’t like

Posted in Uncategorized

Life is a Marathon

It has been just over 5 years since Madi was diagnosed with CCHS. Initially we were overwhelmed, and just could not digest our future, but most especially her future. How will she tell friends? How will she meet “someone” ?

Posted in Uncategorized

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 119 other subscribers

Boston Marathon

weeks
-2
-4
days
0
-1
hours
0
0
minutes
-3
-9
seconds
-3
-8

Providence Marathon

weeks
-2
-1
days
0
-4
hours
-2
-2
minutes
-3
-9
seconds
-3
-8

New York City Marathon

weeks
0
5
days
0
5
hours
0
2
minutes
2
1
seconds
2
2

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

There are no upcoming events at this time.

Twitter