Walking for a Cure

By Haley Weaver

The morning of the Great Strides Cystic Fibrosis 5K Walk is always hectic. We’ve slept maybe a few hours, and are awake and out the door before sunrise to set up tables and games and pick up the breakfast that’s been donated that year.

This will be the 10th year of the Great Strides Walk for me. When we first started attending the walk, the event was held in the field by the Vietnam War Memorial Wall; as it was held in May, it was always unbearably hot and there was no tree coverage to provide relief from the sun. This year it’ll be held, as it has for the past several years, at Seville Square; the shade alone makes the location a blessing.

My family is one of the main planners of the walk now, along with one other family who’ve been involved for many years. Both our families have a team we raise money and walk with, matching t-shirts and all. This year we have 11 teams signed up already, many of them families and friends of a Cystic Fibrosis patient.

I have Cystic Fibrosis, too, but you’d never guess it unless you heard me cough; even then, you might just make a joke like, “Oh you too? Allergies are the worst.” It’s not great, but I could have it worse.

I was diagnosed with CF when I was three and half months old, after my aunt kissed me and noticed how salty my skin was, telling my parents that was a sign of CF. CF is commonly misdiagnosed as asthma and vice versa, as both diseases specifically affect the lungs. I’ve seen both cases occur with patients I know.

CF affects your pulmonary and digestive systems, primarily. My body produces thick mucus it is unable to break down, causing it to coat my lungs and eventually infect them. For this reason, I take breathing treatments to break the mucus up. Additionally, my pancreas does not produce the enzymes needed to digest my food, so I take enzyme supplements when I eat. There are other pills, mostly vitamins my body lacks, but they’re merely minor inconveniences; I am considered an abnormally healthy CF patient.

CF is not a federally-funded disease, which means that any fundraising for a cure is done by private citizens and given to the Cystic Fibrosis Foundation. CF Walks, like this one in Pensacola, are held across the country, and bring in a sizeable amount of the year’s contributions to the foundation’s research. I am one of 30,000 in the country, one of 70,000 in the world, to have this disease.

A reality of this disease, as with any other, is the rotating cast members. I don’t remember having the same coordinator for the event two years in a row; they’d quit before planning began for the following year. During my nearly 18 years at Nemour’s, I had several different doctors, my longest caretaker finally leaving when it became too much treating kids like me without lasting results. I noticed each year when a CF patient came to the walk healthy, and didn’t come the next year at all.

That’s the reality of CF: it’s a task to make it to adulthood, and if you do, it’s even harder to stay in good health. In fact, the life expectancy has grown to 37 in the last ten years, which is far cry from the disease’s childhood when patients were not expected to live past 16.

There is no cure, but advancements are being made every year with help from fundraising events like the Great Strides Walk. In the last few years I began taking medication which targeted the gene rather than the symptom; it seemed to make a difference at first, but that isn’t the case as much now. But there are more medications coming, more progress being made every day, so when it’s time I’ll try those, too.

The Square fills up quickly in the hour between registration and kickoff. The attendance varies each year, but it usually averages out at a few hundred people. Any food we have, anyone working a table, any entertainment – it all comes from donations and volunteers. In the past we’ve had family friends donate a dunking booth for an afternoon, handcrafted mugs to sell with profits going to my team’s fundraising effort, cakes for a cake walk, a firetruck for the younger kids to explore, coffee for the walkers, and a band providing live music while everyone enjoys a free lunch.

(Haley, center, enjoys some time in the park after the annual CF Walk in downtown Pensacola.)

 

The details for food and entertainment this year are still being finalized, but in the past we’ve had food and drinks donated from Bagel Heads, Olive Garden, Publix, Drowsy Poet, Chilis, and BJ’s Brewery. As long as you’ve registered to walk your meal is free, and if you raise $100 or more, you get an event t-shirt.

In longstanding tradition, Great Strides will take place on the Saturday of Memorial Day weekend – this year that falls on May 27. Registration will begin at 9 am, with the walk kicking off at 10 am. It’s a ghost walk, which means that even though the full route adds up to a 5k, walkers can drop off halfway through and just hang around the Square, like I always do.

Important details to take into account: this is a non-smoking event. Cystic Fibrosis is a lung disease, so secondhand smoke is not our friend. Colds are also not our friend, due to our weakened immune systems, so maintaining a safe distance from CF patients if you’re feeling under the weather is appreciated. CF patients even have to maintain a distance from each other, in order to avoid cross-infection.

Please join us for this event. Your support is invaluable, and the event is fun, free, and family-friendly. I speak for myself and all the patients like me when I say that without events like this, without the medicine produced and milestones hit from the fundraising of Great Strides Walks across the country, Cystic Fibrosis would be a much scarier disease.

To donate to the Cystic Fibrosis Foundation and add tomorrows for people affected by this disease, visit cff.org/get-involved/donate. To donate to a specific team for the Great Strides Walk, or to create your own, visit fightcf.cff.org/site/TR/GreatStrides and search for your local event.

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