Celebrating Great Strides and the CF advocates behind it

Thanks to the larger CF community, patients' lives are improving

by William Ryan | June 20, 2024

You’re probably aware of the proverb “It takes a village,” which highlights that having a community is necessary for accomplishing tasks or goals or advancing a cause.

For people like me who have cystic fibrosis (CF), making progress with disease funding, research, and care has certainly required a village. Thanks to the larger CF community, today, people with the condition are more likely than ever to enjoy longer lives and are no longer bound by many of the restrictions that once held us back.

I want to specifically acknowledge the CF advocacy done by people who do not have the disease themselves.

Readers of my column may recall that I’ve written about community before. I’m a product of Jesuit education, which emphasizes the principle of community. It’s an important part of who I am. As the king of New Jersey, Bruce Springsteen, once said, “Remember, in the end, nobody wins unless everybody wins.”

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The power of community

When I think of important childhood memories, I think of all of the years I spent at Point Pleasant on the Jersey Shore taking part in Great Strides. (For those of you interested, Point Pleasant isn’t far from where “the Boss” calls home.) Great Strides is the annual walkathon hosted by the Cystic Fibrosis Foundation, with events taking place across the United States with help from local chapters.

The walkathon is a gathering of all of those affected by CF: family, friends, your parents’ co-workers, friends of your family that you don’t know, and more. It doesn’t matter. Everyone is there to raise money and advocate for those of us with CF in hopes that funding more research will help make our lives easier.

As a child, I spent those Sundays at Great Strides playing Wiffle ball with my cousins and friends, walking around Jenkinson’s Boardwalk in Point Pleasant, and in the years when we could be less than 6 feet apart, just being a kid with other kids who had CF. The “6-foot rule” was eventually put into place, as doctors and scientists realized that close contact among people with CF contributed to the spread of germs, bacteria, and infections, making us even sicker. But on those special event days, the burden of CF wasn’t on our minds for once, despite being in an environment where the disease was front and center.

I haven’t participated in Great Strides since 2008, but I still have family members who donate to other local teams participating in the event.

The money that CF advocates have raised through the walkathon has contributed to the development of CFTR modulators such as Trikafta (elexacaftor/tezacaftor/ivacaftor). While I can’t take these medicines because of my nonsense mutations, it’s been satisfying to watch many in the CF community gain weight more easily, become less reliant on nondrug therapies, and live longer. The number of lung transplants has gone down as well. It’s because of the advocacy done on behalf of patients that we are entering new territories of progress.

Going back to Springsteen’s comment, our community hasn’t won yet. There is no cure for cystic fibrosis, as we’re all aware. However, we are winning against time. When I was born, I wasn’t expected to make it to my current age of 31. It was going to take a miracle.

Now? Only time will tell what advancements I and thousands of others with CF will see in our lifetimes because of the work done by loved ones on our behalf.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

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About the Author

William Ryan William Ryan is an adult with cystic fibrosis and cystic fibrosis-related diabetes. William is from Bayonne, New Jersey, a small peninsula city roughly 20 minutes from New York City. Along with being a columnist, he works in local government helping senior citizens, disabled citizens, and veterans. He was diagnosed with CF in early 1993. He has a rare mutation of CF, mostly affecting his digestive system rather than his respiratory system. William and his wife, Gina, have two dogs, Otis and Ruby. He hopes you’ll enjoy reading his columns as much as Otis and Ruby do.