57 Miles for Cystinosis, Clinton’s Journey Journal

By Clinton Moore

This 57- mile walk was inspired by a movie called the Ataxian. I watched it during Rare Disease Week in Washington D.C. back in February. While watching the film, my mind drifted to thinking about what could I do on the extreme side for the cystinosis community. Two other walkers pledged to endure the entire 57 miles with me. Both good friends, Cody Collins and Elaine Hyler. Other people will be joining for a part of the journey too. We feel good...we are ready. It's time to walk all over cystinosis.

starting line

Clinton, Chandler and Elaine Hyler are ready to begin the 57-Mile walk for cystinosis.

11:40 AM We are off to a late start, but the gang is all here, and we are ready to go. The current plan…to pound as many miles as we can...as fast as we can.

2:00 PM Before beginning the walk, I agreed to complete some “dares” during the race. Kind (or perhaps cruel) donors, provided CRN with $50 donations to see the dares come to life. A little while ago I got a taste of the first dare – dressing like a baby – I wore a diaper and sucked a pacifier for an entire mile! I may be starting to regret this part of the commitment.

RareDare BabyClint

For a $50 donation to CRN Clint and team walked a mile in a diaper with a pacifier. Rare dare #1.

4:00 PM It looks like we are averaging three miles an hour which should put us at 57 miles around noon tomorrow.

6:00 PM We are over 15 miles in, and Annie and Chandler have informed me there is a coconut bra and grass skirt with my name on it. This should be cute. Overall everyone is holding up good so far. Spirits are high.

RareDare Hawaiian

Another Rare Dare for a $50 donation to CRN found Clinton walking a mile in a grass skirt and coconut bra.

8:00 PM Just got word that burgers are waiting for us at our next checkpoint...which will be great. There is a 3-legged dare just before sunset. At this last rest stop people started bending over and grabbing their knees to rest – perhaps fatigue is setting in? Also, we just got word that downpours are imminent. Along with almost guaranteed thunderstorms.

10:00 PM We are now under a tornado watch until 1 am. At around 10:30 pm we had to take cover under a pavilion, but the rain will not dampen our efforts. This storm is severe. Heavy lightning and thunder, downpours, and high winds. We found a large enough area to continue walking after moving a dozen or so picnic tables. There are a few other people also taking cover under the pavilion. It looks like they are playing a card game of some sort. We are doing our best not to get soaked as temperatures are plummeting.

1:00 AM The pavilion was our safe place for the last three hours. However, it is getting late, everyone looks and feels exhausted and those small circles and constant left turns are enough to drive anyone bonkers. So we moved on. Nate joined the walk. It is now 60 degrees! Who’s making fun of my jeans now?

3:00 AM Cody has just informed me he cannot go on. He gave it 100% effort. He’s been struggling for the past couple hours with foot pain.

3:30 AM Elaine just told me she must lay down. She cannot go on either. She is also experiencing foot pain. I have Nate and his legs are still fresh.

4:30 AM The internal struggle begins. The thoughts of... ‘I can’t do it, and I won’t do it again’ are haunting me. Should I make a change in trail? This road is beating me up. The large rocks are terrible on my feet. I just stare at the road. It looks no different than the sky. Dark. All outside communication has stopped. No texts. No calls. No Facebook notifications. It’s quiet. Too quiet. Everyone is asleep as they should be. My own mental demons are telling me to quit. I feel defeated and alone. I am exhausted. I grabbed some snacks in hopes of an energy boost, but it doesn’t seem to be working. I’m pretty sure I just swallowed a bug. Even Nate and I are barely talking. The mental fatigue at this point is out weighing the physical by far.

6:00 AM The sun is back and it’s like a breath of fresh air. We made a trail change to ease the walking efforts. There is storm damage everywhere.

OneMan57Miles

8:00 AM Less than 13 miles to go… Just got a text from Clair. She has coffee and a bagel waiting for us.

11:00 AM Here we go – a rare dare to make a rap song to include Elijah (Emily Mello’s son). Our group came up with it together and I was happy to nail it on the first take! We wanted to be finished during this hour. Watching those minutes tick by, and having the finish line beyond my viewpoint are a blow, but we keep moving.

1:00 PM There are 1.7 miles left. The original plan had us finishing at the end of this loop, but staying true to ourselves, we were a bit short due to some of the improvisations we had to make.

LastLap

Almost there! The last lap.

1:30 PM Our 57- mile mission is complete! WOW – the emotions! Family and friends met us at the end and this journey has left each of us with tears in our eyes. This was beyond tougher than I thought. I completed over 400 miles of training walks that helped but the mental stress was extreme. That being said, I would gladly endure this again as well as much more for this community.

57MileWalkers FinishLine

Mission accomplished! The 57-mile walk for cystinosis is complete. Thank you to Clinton and his team, Cody Collins, Clint and Chandler Moore, Elaine Hyler and Nate Roberts.

You can check out videos from the journey on our Facebook page: facebook.com/CystinosisResearch. We are currently putting together a task force for the 2019 Cystinosis Awareness Day and determining how to expand on the success of 57 Miles for Cystinosis. Email me if you would like to be a part of these events at This email address is being protected from spambots. You need JavaScript enabled to view it..

UPDATE: Clinton’s team had a fundraising goal of $10,000. At the end of the 57 mile walk they had exceeded their goal.

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