02/25/2014 11:55 am ET Updated Dec 06, 2017

Putting Faces to a Cause Gave My Fundraising a Boost

Sarah Coulam

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A little over two years ago, I started training for my first Ironman triathlon. I had some friends who had done triathlons, and whether it was peer pressure or inspiration, I decided to get involved myself.

I had run 10 marathons before, but Ironman would be the most intense event I'd ever done. An Ironman starts with a 2.4-mile swim, followed by a 112-mile bike ride, and ends with a full 26.2-mile marathon.

It was April 2011 when I bought a bike to start training. I'm pretty sure that the last bike I owned had streamers and a basket on it, so when I put on my bike shoes and buckled in for the first time, it was intimidating.

A few months later I got a new job as National Director of Endurance Events for the Children's Tumor Foundation. My role is to manage the endurance events program that allows individuals to participate in any type of endurance event and raise money on behalf of the foundation.
That's when I met Kylie.

I was working at a race in Dallas in December. It was pouring rain and freezing out, but Kylie's whole family was they're doing the event in her honor. Kylie was 6 years old, and had neurofibromatosis. NF is a genetic disorder that causes tumors to grow along the nerves and throughout the body. It can cause deafness, blindness, learning disabilities and extreme pain. Kylie was diagnosed at 6 months and lost her eye at age 3. Kylie's mom had completed several marathons for her daughter and raised thousands of dollars for NF research and treatment.

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Kylie has this ability to make everyone she meets laugh. She has spent her whole childhood visiting doctors and dealing with NF, but you wouldn't know that if you met her. She is such a high-energy kid. I decided to use my first Ironman as an opportunity to tell people about NF and support Kylie and other kids like her.

To do this, I dedicated the last 99 days of my training to a different individual with NF. Through Facebook I highlighted 99 different heroes over the course of 99 days. I shared stories and photos of these kids and their families, along with a link to my donation page. I would also tag the parents so they would share my post with their friends. In the end, I raised more than $13,000 for research.

When race day came, I honored my 99 heroes by putting all their names on the back of my shirt for the run portion of the triathlon. I also filled my bag with pictures and notes the kids made for me. Overall, it was the probably the best day of my life. I completed my first Ironman in 13 hours and 35 minutes and felt so much support from my friends, family and the heroes like Kylie and others I had met in the past year.

As it turns out, triathlons are addicting. I know it sounds crazy, but when you dedicate so much time and energy to something, you basically fall in love with the sport. I did my second 140.6-mile event, Ironman Lake Tahoe, in September 2013. Once again, I raised money for Children's Tumor Foundation to fund research for neurofibromatosis. This time, I dedicated my last 140 days of training to an individual living with NF.

Each day I changed my Facebook profile picture and my cover photo to spotlight one of these heroes. I found that putting a face to the cause really helped me bring more awareness and connect with others. Friends from high school and even teachers I had from elementary school reached out to me because they were inspired by these stories. I raised more than $11,000.

When race day came, the outside temperature was 37 degrees and the water was a nice 62, which was the warmest part of the entire day. As I waited in the corral, I jumped up and down and tried to focus on something else to avoid the numbness in my toes. Out of the crowd I saw one of my NF heroes Ava who had come to Tahoe to see me. She and her mom had a huge sign for me saying "Kick NF's Butt!" It got me off to a good start.

Later, after a few miles on the bike, my lower back was starting to ache from leaning over so much while climbing uphill. As I reached the first big turn around at mile 8, I heard my name. It was Michelle, mother of NF hero Timmy who drove up for the event. As soon as I saw him, I sucked up all the pain. Timmy wears a scoliosis brace to keep the curve in his back from worsening and will require numerous surgeries to repair his spine. I stopped and gave Timmy a high five.

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With these kids inspiring me every step of the way, I finished the race in 14 hours and 37 minutes.

I had lunch with Ava the next day and I got to present her with her own Ironman medal. She smiled and gave me a big hug. She calls it her Superman medal.

Then she asked me, "So what is next?"... GOOD question Ava.

This August, I'll be doing my third tri, Ironman Mont-Tremblant in Canada. I'll start fundraising in the spring -- there are still so many more kids and families whose stories I want to tell, and so much more work to be done for the cause.