Fighting Scleroderma while Running the Chicago Marathon

We did it!!  Thanks to some serious persistence and the help of readers, family and friends, our plea was heard by the Chicago Marathon people and we were guaranteed 15 spots in the 2018 Marathon!! This means I’ll be running next October and spending the next year raising money to end Scleroderma. (Here’s the initial post on this if you want more of the background.)

IMG_8191A little back story, in case you are lost… Nearly 2 years ago, Emily, one of my younger sisters, was diagnosed with Scleroderma, an autoimmune disease that leads to the hardening of the skin, internal organs, connective tissues, etc… It’s rough! Prior to this, Emily was an endurance athlete. She completed the Madison Ironman, has run 3 Chicago marathons, does multiple triatholons each year, and was in amazing shape. Her diagnoses threw us all for a loop.

As her health deteriorates she has become passionate about finding a cure for Scleroderma so others don’t need to suffer as she does. To create awareness and raise money for research she wanted to put together a charity group to run the Chicago Marathon. But the initial attempts to be recognized as a charity by the marathon staff weren’t honored. When other charities began recruiting, and we still hadn’t heard, I suggested we take to social media and see if we could stir some things up.

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Emily and I talked it through. We got together and started a mini campaign. A blog post, hundreds of shares later, some phone calls, and suddenly Emily was talking with someone on the Marathon planning committee that would guarantee our group 15 spots.

Yippee!!  We are still looking to fill the team, so if you are interested in running and raising money for a great cause, let me know and I’ll send along the details. (

If you would like to help fund the research for a cure, you can support our cause here. Please note: Each person running is paying for their own marathon entry, so 100% of your donation goes to the Scleroderma Research Foundation.

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It’s hard watching your little sister go through this. She’s in constant pain, saying her days range from crappy to really crappy with not much in between. But she’s a fighter. She is trying to make a difference. She keeps working out and keeps a really strict diet in order to keep some of the symptoms at bay. Two months ago on Instagram she started chronicling daily the thing she is most thankful for that day. She started the series as a way for her to stay positive and focus on all the good in her life, even when things seemed mostly negative. She’s pretty awesome.

Now, I need to get to training. This will be my third time running the Chicago marathon. I’m hoping to hit a personal best and run under 4 hours, 30 minutes. Training starts now! I’ll be spending the winter months working on building up my speed and muscle and then the spring working a lot on distance. Thanks goodness for the Aaptiv app, which has marathon training courses that I’ll be utilizing throughout the next 11 months.


Katy Rose
Filed In: Fitness

2 thoughts on “Fighting Scleroderma while Running the Chicago Marathon

  1. Alice F

    I had never heard of Scleroderma until I read your earlier article. Congrats on getting a team together and bringing attention to such a worthy cause.

  2. Pingback: Chicago Marathon 2018 - Here I Come - ModlyChic

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