Celebrating Great Strides and the CF advocates behind it

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

William Ryan avatar

by William Ryan |

Share this article:

Share article via email
banner graphic for

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.”

Recommended Reading
A red pen is checking off boxes marked clinical trials on a clipboard checklist.

CF gene therapy 4D-710 improves lung function, data show

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.


Anthony Palmiero avatar

Anthony Palmiero

Great article Will. Love you

William Ryan avatar

William Ryan

Thanks! Love you too!

Helen Palmiero avatar

Helen Palmiero

Hi Will! It was great reading your column. While I don't have CF, I have another quite serious illness which I am now in my 13th year of, with no signs of wear and tear! Amazing! I have the Lord Jesus to humbly thank for this. I also want to give a great big thanks to all those (personal friends and others) who have participated in walk-a-thons, fundraisers, clinical trials and other various helps. You and I have a lot in common with these helps and we are living proof they HAVE helped. Love you, Will.

William Ryan avatar

William Ryan

They've done a great job, love you too!

Nancy truppner avatar

Nancy truppner

Wow! This is intense . Great article Will , thank you for educating me on CF.. Moving forward I will be reading all articles..

William Ryan avatar

William Ryan

I hope you do! Thank you!

Frances Czochanski avatar

Frances Czochanski

I miss those family and friends gatherings!

William Ryan avatar

William Ryan

Me too, Aunt Fran!


Leave a comment

Fill in the required fields to post. Your email address will not be published.