My hope to run for the Scleroderma Research Foundation in the 2018 Chicago Marathon

Several months ago, my sister Emily sent a message to the group text – ‘I’m trying to put together a group to run the Chicago Marathon for Scleroderma research.’ Her message was met with a resounding ‘hell yeah’ from us siblings as well as a number of other family members and friends. Having run the Chicago Marathon once on my own and once for a charity – Mercy Home – I was all for this endeavor. Honestly, I’d been looking for another reason to jump into marathon training and to put another Chicago race on my list of runs done.

chicago-marathon3 But more than just the pure awesomeness of running in the Chicago Marathon – the best, in my biased opinion – I was also excited to jump at this opportunity, because my sister was recently diagnosed with Scleroderma. I still vividly remember the day  when she got the results from the doctor – results that said she had an autoimmune disease that would eventually lead to the hardening of her, skin, connective tissues, internal organs and muscles. All the siblings came together that night at my parents house. We sat around in the living room, as many of us piled together on the couch as possible, in order to offer our support and encouragement.

As with every life-long ailment, we adjusted to a new way of life – Emily most of all. Her diet changed, and our menus changed for family events. We started thinking more strategically about the things we do and the places we go, so that we can do things that won’t cause her to be cold or eat foods that seem to make the problem worse. And we started dreaming of finding a cure. But a cure means drawing more attention to the cause and raising money for research. With Scleroderma is such a little known autoimmune disease it is even harder to draw attention and raise funds.

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All the relatives that got together last summer to run a half marathon for my dad’s 60th birthday. (Imagine the number who would run for such an amazing cause!)

Since Emily was the family member who got all of us into running, it seemed fitting that her family and friends would come together and run for a cure. Emily reached out to the Scleroderma Research Foundation and told them she would like to run the 2018 Chicago Marathon for the foundation and that she would have a number of friends who would do the same. They submitted the request to be a recognized charity, but have yet to hear either way. While other long-time charities have already heard and have already begun recruiting runners, we are still holding our breath, hoping and praying that the foundation is approved.

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The first marathon we ran together – The 2009 Chicago Marathon.

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We really, REALLY, want to run the 2018 Chicago Marathon for Scleroderma research! And it isn’t just myself and my sister planning to run. We are a family of 9 children – most of them will run. My dad has already started training. We might be able to strong-arm my mom into it too. A number of cousins have committed to running it as well. Emily’s friends and co-workers and running buddies have also said they will lend their support and run for the charity. Overall, we can make a pretty hearty sized group, if the Chicago Marathon accepts the application.

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Enough from me… Check out Emily’s own words about her diagnosis and her hope for a cure:

In January of 2016 my life changed in the most unexpected way – I was experiencing some unusual symptoms so with some encouragement from my family I decided to go to the Doctor. It was then that I received a diagnosis of Scleroderma. My knowledge of the disease at the time was incredibly limited, all I really knew was that it is incredibly painful and took the life of my Mom’s Aunt. In the span of a 15 minute Dr’s visit in which I was given the results, my world came crashing down. I was terrified with a million thoughts racing through my head. How can I be this sick, I just did an Ironman?! Am I dying? What is my life expectancy? What does this mean for the rest of my life? What exactly is scleroderma? For those that don’t know, Scleroderma literally means “skin-thickening” and affects the connective tissues in the body, affecting the joints and internal organs. There is NO CURE.
For the next 6 months I fought with the insurance company and with Doctors to be able to see a much needed Scleroderma specialist. But the process was long and painful while I tried to figure everything out. Constant pain, swelling in my arms and legs to the point my family couldn’t even hug me, exhaustion and joint pain just to name a few. The doctor was impressed with how physically active I was and encouraged me to stay as active as possible. My visits to the gym and my runs were my saving grace. My runs gave me time to process everything I was going through, to cry it out and leave my emotions and fears on the pavement. Running has always been there for me and I attribute my ability to handle this obstacle fairly well due to the perseverance and mental toughness that I have gained through been completing 4 marathons and a full Ironman.
Unfortunately though, over the last year and a half, I have realized that my ability to participate in these sports is becoming harder and harder. The chronic pain, change in diet and daily struggles are greatly affecting my joints and ability to compete. In October of 2018 – it will be 10 years since my first marathon and I wanted to mark the end of my endurance racing the way it started – with the Chicago Marathon while raising money and awareness of Scleroderma.

How can you help?

  • help us spread the word about Scleroderma.
  • share this post and social posts to ask the Chicago Marathon to approve the Scleroderma Research Foundation as a 2018 Chicago Marathon charity.
  • join our team, when and if we get one! The more the merrier.
Katy Rose
Filed In: Fitness

4 thoughts on “My hope to run for the Scleroderma Research Foundation in the 2018 Chicago Marathon

  1. Mrs Marilou Purpura

    Dear sweet Emily, you and your family are in our thoughts. I will pray extra hard for you. I didn’t know the name of your sickness but wanted to let you know that Dave and I have been praying for you. We still have a medicine cabinet and I put contact paper inside like chalk board. And I wrote all the people I am praying for on it. You have been on it for 5 years! I didn’t know what was wrong but I still prayed you were doing ok. I noticed your name appears on the kids prayer board. ( in kids bathroom) we love you and I wanted you to know that we were praying.

  2. Terry and Karen Hostert

    Emily and Hinderer Family – you are abd will be in our prayers. My aunt/godmother passed away from schleraderma in 1995. There is a contingent of friends from Macomb that regularly run the Marathon. I’ll pass the word to look for and run for this charity.

  3. KATHLEEN HERMAN

    Hello Shirley and Family,

    As you know I am all too familiar with the process of autoimmune diseases. Each illness is unique, and frequently debilitating. If you need any support feel free to reach out. We moved to Crystal Lake, but you can still reach me by phone. I will be keeping you in my prayers as you find your way in the world or autoimmune diseases.
    Peace and Love, Kathy Herman

  4. Pingback: Fighting Scleroderma while Running the Chicago Marathon - ModlyChic

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