My Great Strides Story
Ethan, Jeff & Sarah Vander Molen
Fundraising for Paramus Great Strides 2026
Ethan, Jeff & Sarah Vander Molen
ETHAN'S TEAM
CORNHOLE FOR A CURE 2026, Saturday May 16
to sign up for cornhole: https://passion.cff.org/cornholeforacure
GREAT STRIDES 2026, Sunday May 17
11am Van Saun Park, Paramus
Our 28th year supporting a cure for Cystic Fibrosis!
Recently, my cousin asked me to share about Cystic Fibrosis with her 7th-grade class at Eastern Christian School. This isn't always my comfort zone, and while I'm okay sharing my story, I also don't want them to feel bad for me or to scare them with it. The words “Cystic Fibrosis” can sound scary enough.
CF makes for a great science lesson. I explained how the CFTR gene doesn’t allow salt to move properly through my cells, leading to the thick, sticky mucus that gets trapped in my lungs and other organs. I showed them my baseball caps with the distinct salty line around the cap, and we talked about the Punnett Square. That helped them understand that CF is genetic, caused by a double recessive gene, and not something you can “catch.”
I shared about my daily treatments, including using my vest to help shake the gunk out of my lungs and a combination of nebulizer medications. I showed them what it looks like when the vest is on and vibrating, and I think the kids really got a kick out of it. I also talked about my daily medications, including the enzymes that help me digest food and the modulator medication Trikafta, which helps my cells function more effectively.
I have done so well over the past ten years that I sometimes start to wonder whether all these treatments are still necessary. However, I’ve learned that if I miss a treatment or skip even a dose or two of medication, the effects show up almost immediately. My coughing increases, breathing feels tighter, digestion gets thrown off, and strange aches begin to linger. Trikafta has significantly improved my life, but it still isn’t a cure.
When I tell my story at age 27, I recognize God’s goodness in bringing me from a time when I missed so many days of middle school to a season where I’m able to work, live life, and haven’t been hospitalized since high school. It was humbling to share that with the 7th graders.
Sharing my story is not about putting the spotlight on me. It is about the 40,000 people in the United States who are living with CF. I believe one of my purposes is to be an advocate for CF and to raise awareness by sharing my experience. Not every CF patient has had the same outcomes I have been blessed with in recent years. Today, I am part of a newer generation of CF patients who are living longer as adults because of the modulators we are taking. When I was born, the median predicted survival was about 28 years. It was recently published that the median age for those born with CF in 2026 is now 65. For those who remember the “Sixty‑five Roses” story, the numbers now match.
Having lived through hard years with this disease yet still being young enough to benefit from the life‑changing medications available today, I’m grateful for the timing of CF treatments in my life. Some people with CF are fighting for every breath, and there are young children who may never have to experience that if we continue working toward a cure.
The 7th graders wrote me thank-you cards after I came into class to speak. Some wrote, “Hope you get better soon!”, which made me smile, but the bigger impact line was, “I’ll be praying for you.” We all have hardships in life, and I hope the example of the kids supporting me is something I can take from this day and do for others.
I’m truly grateful for all your support, and I hope we can make this another meaningful and successful fundraising season as we continue working toward a true cure for Cystic Fibrosis.
Thank you for your donations as we continue to have hope for a cure!
- Ethan Vander Molen
CORNHOLE FOR A CURE 2026, Saturday May 16
to sign up for cornhole: https://passion.cff.org/cornholeforacure
GREAT STRIDES 2026, Sunday May 17
11am Van Saun Park, Paramus
Our 28th year supporting a cure for Cystic Fibrosis!
Recently, my cousin asked me to share about Cystic Fibrosis with her 7th-grade class at Eastern Christian School. This isn't always my comfort zone, and while I'm okay sharing my story, I also don't want them to feel bad for me or to scare them with it. The words “Cystic Fibrosis” can sound scary enough.
CF makes for a great science lesson. I explained how the CFTR gene doesn’t allow salt to move properly through my cells, leading to the thick, sticky mucus that gets trapped in my lungs and other organs. I showed them my baseball caps with the distinct salty line around the cap, and we talked about the Punnett Square. That helped them understand that CF is genetic, caused by a double recessive gene, and not something you can “catch.”
I shared about my daily treatments, including using my vest to help shake the gunk out of my lungs and a combination of nebulizer medications. I showed them what it looks like when the vest is on and vibrating, and I think the kids really got a kick out of it. I also talked about my daily medications, including the enzymes that help me digest food and the modulator medication Trikafta, which helps my cells function more effectively.
I have done so well over the past ten years that I sometimes start to wonder whether all these treatments are still necessary. However, I’ve learned that if I miss a treatment or skip even a dose or two of medication, the effects show up almost immediately. My coughing increases, breathing feels tighter, digestion gets thrown off, and strange aches begin to linger. Trikafta has significantly improved my life, but it still isn’t a cure.
When I tell my story at age 27, I recognize God’s goodness in bringing me from a time when I missed so many days of middle school to a season where I’m able to work, live life, and haven’t been hospitalized since high school. It was humbling to share that with the 7th graders.
Sharing my story is not about putting the spotlight on me. It is about the 40,000 people in the United States who are living with CF. I believe one of my purposes is to be an advocate for CF and to raise awareness by sharing my experience. Not every CF patient has had the same outcomes I have been blessed with in recent years. Today, I am part of a newer generation of CF patients who are living longer as adults because of the modulators we are taking. When I was born, the median predicted survival was about 28 years. It was recently published that the median age for those born with CF in 2026 is now 65. For those who remember the “Sixty‑five Roses” story, the numbers now match.
Having lived through hard years with this disease yet still being young enough to benefit from the life‑changing medications available today, I’m grateful for the timing of CF treatments in my life. Some people with CF are fighting for every breath, and there are young children who may never have to experience that if we continue working toward a cure.
The 7th graders wrote me thank-you cards after I came into class to speak. Some wrote, “Hope you get better soon!”, which made me smile, but the bigger impact line was, “I’ll be praying for you.” We all have hardships in life, and I hope the example of the kids supporting me is something I can take from this day and do for others.
I’m truly grateful for all your support, and I hope we can make this another meaningful and successful fundraising season as we continue working toward a true cure for Cystic Fibrosis.
Thank you for your donations as we continue to have hope for a cure!
- Ethan Vander Molen
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