Kat Steele is a LAM patient who commemorated the 5-year anniversary of her diagnosis by participating in the New Hampshire Marathon on September 29, 2018. Each member of Kat's family joined in the race, including husband Adam, daughter Emma, and baby Sloane cheering from the sidelines!
Ahead of the race, Kat developed a successful Facebook campaign to raise money for The LAM Foundation, posting about the family's training and fundraising progress. By race day, the family had raised over $6,000! Here, Kat shares insights from her journey as a LAM patient, as a runner, and as a fundraiser.
How long have you been a runner, and how does this affect your life with LAM?
I’ve been a runner for about as long as I can remember. If I had to guess, I would say I’ve been running for over 20 years now. The difficulty, of course, is how being diagnosed with LAM has impacted that.
I ran track & field and cross-country throughout high school and college. In high school, I was told that I had exercise-induced asthma. I was always the last Varsity runner, or the first JV runner, and grew frustrated with the fact that I felt like I could never breathe the way my other teammates could. It wasn’t until years later that the reason behind that became clear. According to my pulmonologist and the researchers at the NIH, the cysts on my lungs from LAM likely began to develop during my early 20s, so this is right on par with the timeline and symptoms I was experiencing then.
After my LAM diagnosis, running became a frustrating activity; it was no longer as enjoyable for me as it had been in the past. Learning how to breathe while running was a strange experience after three pleurodesis surgeries. I eventually had to become more accepting of my “new normal,” and realize that running one to two miles with my lungs was an accomplishment in and of itself.
How did you come up with the idea to run a marathon to raise money for LAM?
The idea to run a road race and raise money for The LAM Foundation was actually my husband’s. He was the one who originally pitched me on our family running the NH Marathon, 10K, and kids marathon, since all three events are held on the same day.
Because this year was the five-year anniversary of my LAM diagnosis, I wanted to do something different to commemorate the event. In the past, I’ve participated in World Wide LAM Awareness Day, and helped to organize other fundraisers for The LAM Foundation. So, I thought by getting our whole family involved and setting a $5,000 fundraising goal—for my 5 years of life with LAM—we’d have a fairly marketable and successful fundraiser. More importantly, however, was the fact that I really wanted to prove to myself that I could run 6.2 miles again, despite all that I’ve been through with this disease.
How did the entire family get involved and participate?
As I mentioned, my husband, Adam, was the one who originally proposed the idea of participating in the road race. Each April, he runs the Bull Run Run 50 Miler race here in Virginia, and we have contemplated doing that as a fundraiser for The LAM Foundation. So when he expressed an interest in running the NH Marathon, I told him that the only way would be if we made it a family fundraising endeavor.
My 6-year-old daughter, Emma, was involved with her elementary school’s running club this past spring, so it seemed like a natural extension of that for me to train with her. We would go out for runs every Saturday morning and gradually build up our mileage in anticipation of race day. We started jogging together and logging about a half mile in the beginning. By the time race day rolled around, her longest run was about 1.5 miles, and mine was 3.
Beyond the actual running of the race, it was really fun to have my daughter involved in the social media and fundraising aspect of this. In an effort to raise greater awareness, I did a raffle on Facebook for some Starbucks gift cards. Emma was the one who drew the winning names out of a hat, and posed in a picture announcing the names. I also had her help me out with a few videos online, so that we could approach our fundraising efforts from a more comprehensive angle that was likely to garner greater attention on social media.
How does it feel to see your community come together to support you & LAM research?
Time and time again, I continue to be both amazed and impressed with the support from The LAM Foundation community, and from the community of people who support me personally. I also found myself really surprised by the impact of social media with this particular fundraiser. For instance, over the summer, I taught a yoga class at a business retreat. Several of the women, whom I had never met beforehand, got word of my fundraiser and made donations. I really think my family did a pretty effective job of leveraging social media to help us meet and exceed our fundraising goals.
Beyond that, it was also really great to see some of our friends come out and cheer us on during the race. However, I must say that the true icing on the cake came from getting some last-minute, unexpected press coverage by local NH newspapers, who have previously covered my running career and difficulties with Lymphangioleiomyomatosis. Making the front page of the local newspaper with a picture of me hugging Emma during the race is truly something I will never forget.
What were the most challenging parts of this event?
The most challenging parts of this event were making time for the physical training, and then the actual running of the event. While in high school and college, I ran this particular 10k race before and won it several times for my age group. The most disheartening and challenging struggle was running it this year and not finishing as well as I had previously. Of course, after undergoing three lung surgeries, sustaining 10+ lung collapses, and being a decade older, I’m frankly just happy to have finished.
What were the most rewarding parts?
There were so many rewarding parts of this event that it’s really tough to narrow them down! First and foremost was crossing the finish line and proving to myself that I was capable of accomplishing the actual running of this race. The next most rewarding part would be the fact that Emma won the kids marathon for her age group, and that my husband set a personal record for his marathon. Seeing the two of them be so successful truly warmed my heart and put big smiles on all of our faces.
After that, of course, would be the fact that our fundraiser was a success, and that we raised over $6,000 for The LAM Foundation. The unexpected press coverage was also hugely rewarding, as it truly made us feel like this event was a victory on all fronts: It was personally rewarding, it raised funds to continue further research, and it also raised greater awareness of this devastating disease.
How did it feel to cross the finish line and see your family do the same?
It felt incredible to cross the finish line, even though I wasn’t able to run the whole race and had to walk for parts of it. The NH Marathon and 10K at Newfound Lake is extremely hilly, so I really just had to stay positive and be kind to myself mentally throughout the run. My hope is that in proving to myself that I can finish this distance, despite having to run for part of the course and walk for others, I can in fact continue pursuing a sport that I have always loved.
Seeing Emma and Adam cross the finish line filled me with pure joy. To have such a strong level of commitment from your family members that they would commit to training and racing for you, whether they are 6 years old or 37, is really pretty awe-inspiring. I’m insanely proud of them, and know that I personally wouldn’t have been able to make it across that finish line without their love and support, not only in the months leading up to the race, but also over the course of the past five years.
Do you have any lessons from this experience you’d like to share with other Lammies, or advice on fundraising?
Absolutely! A good friend asked me several months ago to consider what would happen if I simply “considered what IS possible?” At the time, her question was meant to guide me in some self-inquiry for a yoga program I was participating in, but I found it to be very applicable to my training for this event. I have a tendency to worry, overanalyze, and sometimes focus on the negative. When I mentally put myself in check and stopped worrying about what was or wasn’t possible, it was much easier to let my mind and body focus on the real training, fundraising, and other aspects of this event that were necessary for it to be a success.
I think as LAM patients, many of us have a tendency to “proceed with caution” when it comes to our lungs and our bodies, as we should. But sometimes, it’s okay to let go of all the worries and see what we are capable of when we stop being so concerned about whether or not we will break. The point, after all, is living life to the fullest, right?
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