Stephanie Sims

Team CHM at The IRONMAN World Championships in Kona, Hawaii
  • My Goal:
  • $5,000
  • Raised So Far:
  • $7,270
  • # of Donations:
  • 71
$7270 of $5000 goal
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I grew up knowing that my dad was going blind. It was often difficult for him and for our family knowing that he was losing his vision. Dad has choroideremia (CHM) which is a rare, genetic eye disease. CHM causes night-blindness in childhood followed by progressive peripheral vision loss and eventual total blindness. Based on our family tree, I knew from a young age that I was a “carrier” of the disorder causing my dad to go blind. I knew that I had a 50/50 chance of passing the affected CHM X chromosome to my future children. I wondered if I should have children of my own. 

In January 2009, our son, Sullivan, was born and our world was forever brightened!  When Sullivan was 4-years-old, his ophthalmologist told us that his retinas were showing signs of CHM. At first, I was devastated and sad. The thought of our beautiful boy having to lose his vision was overwhelming to me. I grappled with feelings of guilt and ineffectiveness in the face of the diagnosis. Justin was extremely supportive and positive, but I struggled to see the hope in the situation and at times felt depressed.

My parents encouraged me to become active with the Choroideremia Research Foundation (CRF). By educating myself more about CHM and the various research trials being conducted, I was able to eventually find a ray of hope. I decided that I wanted to give fundraising a try! I learned that Team CHM was to be an official charity for IRONMAN Wisconsin (IMWI) in September 2016. At that point I hadn’t even done a half Ironman yet but I decided that racing a full IRONMAN would be my way of raising awareness and funds for Team CHM.  Training for and completing IMWI for Team CHM was one of my proudest accomplishments.

Now in October 2017, I have been given the opportunity to race at IRONMAN's World Championship in Kona, Hawaii. This is a presigious race in which you can only participate if you are an age group winner or if you are representing a charity cause.  I never thought I'd be training for full Iron distance races two years in a row but my dedication to this cause helps keep me going.

Please consider supporting Team CHM and helping the CRF find a cure for choroideremia.

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My Story
The Cause
Stephanie Sims is fundraising for Team CHM benefiting Choroideremia Research Foundation.

I grew up knowing that my dad was going blind. It was often difficult for him and for our family knowing that he was losing his vision. Dad has choroideremia (CHM) which is a rare, genetic eye disease. CHM causes night-blindness in childhood followed by progressive peripheral vision loss and eventual total blindness. Based on our family tree, I knew from a young age that I was a “carrier” of the disorder causing my dad to go blind. I knew that I had a 50/50 chance of passing the affected CHM X chromosome to my future children. I wondered if I should have children of my own. 

In January 2009, our son, Sullivan, was born and our world was forever brightened!  When Sullivan was 4-years-old, his ophthalmologist told us that his retinas were showing signs of CHM. At first, I was devastated and sad. The thought of our beautiful boy having to lose his vision was overwhelming to me. I grappled with feelings of guilt and ineffectiveness in the face of the diagnosis. Justin was extremely supportive and positive, but I struggled to see the hope in the situation and at times felt depressed.

My parents encouraged me to become active with the Choroideremia Research Foundation (CRF). By educating myself more about CHM and the various research trials being conducted, I was able to eventually find a ray of hope. I decided that I wanted to give fundraising a try! I learned that Team CHM was to be an official charity for IRONMAN Wisconsin (IMWI) in September 2016. At that point I hadn’t even done a half Ironman yet but I decided that racing a full IRONMAN would be my way of raising awareness and funds for Team CHM.  Training for and completing IMWI for Team CHM was one of my proudest accomplishments.

Now in October 2017, I have been given the opportunity to race at IRONMAN's World Championship in Kona, Hawaii. This is a presigious race in which you can only participate if you are an age group winner or if you are representing a charity cause.  I never thought I'd be training for full Iron distance races two years in a row but my dedication to this cause helps keep me going.

Please consider supporting Team CHM and helping the CRF find a cure for choroideremia.

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About

The Campaign:

Team CHM

Team CHM is a group of athletes committed to Ending Blindness caused by Choroideremia (CHM).   We r

The Organization:

Choroideremia Research Foundation

The Choroideremia Research Foundation Inc. is an international, non-profit organization dedicated to...

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