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 their friends and family members, as well as other companies, and members of the rare disease community.

In total, the team included:

  • 63 Employees, immediate family, & close friends
  • 19 Rare disease community members
  • 18 Employees from other companies
  • 58 Different rare disease communities represented
  • Runners from 14 different states and 3 different countries
  • Patient partners from 19 different states and 2 different countries

Step change

One might say that, in 2015 , Running4Rare went through a ‘step change’, growing from a team of 30 employees to a team of 100 runners.  Historically, Running4Rare was comprised of 11-18 members, all running the Boston Marathon.

Last year we recognized that Running4Rare needed more time and resources than we as a volunteer board could provide.  Additionally, last month we received the news that our company would no longer be providing funding support for employee participation in the Boston Marathon.  With this news and the overwhelming success of the 2015 experiment, came the realization that this grass roots program, which we started in 2008, had grown wings and may now be ready to FLY….


So was 2015 a ‘step change’ or was it just an ‘outlier’ in the history of Running4Rare?   We thought this would be a good time to take our partnership with NORD to the national  level.

We have been working with NORD and the UDN to expand the program.  We will be fielding a team of 13 runners in the Boston Marathon and will soon be sending out a communication recruiting runners to participate with us in Providence on May 1, 2016.  We have also been accepted as a charity partner for the 2016 NYC Marathon on November 6, 2016 and will be fielding a team of 5 runners in the big apple.

rfrd trend with wings


Time will only tell, but as I sit here on January 1, 2016 perched on the data point that was 2015, with wings spread, I am feeling optimistic about where we are headed.


Stay tuned here or at Running4Rare on Facebook for more information about joining us in Providence and/or New York.

 I’M IN!  How about you?


Posted in Uncategorized
13 comments on “Step change or Outlier
  1. Rena says:

    I’m in!!!

  2. Kristin says:

    I’m in!!!

  3. Beth says:

    Looking forward to the next chapter in this team’s amazing story!

  4. Jason Dunklee says:

    I’m in. As a Providence runner, I was amazed at the participation at the Providence marathon. In some ways it was better because it was more inclusive – due to lower entry requirements as well as the half-marathon option. I thought the 2015 combo of Boston & Providence was well done and would expect 2016 also to go well.

  5. Amy Atwood says:

    I’m in- as alumni and cheer squad and one of this team’s biggest fans!!! So excited for all to come for the team and the rare disease community! It’s a new world, but it’s going to be fabulous!

  6. Anne Burtenshaw says:

    We are absolutely in and very excited about the journey ahead.

  7. Jessi says:

    Awesome! I am totally confident that 2015 was a step change and I can’t wait to see what’s in store in the next chapter of this amazing team’s story!

  8. Sara Larrabee says:

    I’m in!!

  9. Emma Rooney says:

    Happy to be part of the growing story. Thanks for starting the 2016 posts Phil! Happy New Year to everyone.

  10. Tara Notrica says:

    I’m so glad you “grew wings” and are ready to “FLY.” I”M IN!

  11. phil says:

    Thanks everyone for checking in and showing how special this community is.

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