Ethan, Jeff & Sarah Vander Molen

ETHAN’S TEAM - GREAT STRIDES 2024

Cornhole For a Cure - Saturday May 18, 2024

https://passion.cff.org/cornholeforacure

Walk to Cure Cystic Fibrosis - Sunday May 19, 2024-Van Saun Park, Paramus 11:00am

Why are we continuing to fundraise? This thought has been on my mind.

When I run into familiar faces, a common question is, “How’s your health?” Generally, I respond with a quick reply of, “Good! I’m thankful this is how I’m feeling and doing right now”. However, this doesn’t mitigate the difficulties of growing up and living with cystic fibrosis.

I am 25, and it’s incredible to see, in my lifetime, the work of the Cystic Fibrosis Foundation and how it has impacted my current health. Growing up, treating CF was only about following my symptoms with another pill, additional respiratory therapy, IV medications, and many hospitalizations to help ease the problems. When I was a teen, I fell into the first 4% of CF patients who qualified for a gene modulator drug based on my specific genetic mutations. This medication was the first therapy to help the underlying cause of CF in the cells rather than just treat symptoms. This modulator is helping me significantly today, and current versions are available to about 90% of CF patients.

Less than 90 years ago, cystic fibrosis wasn’t even a phrase. In the grand scheme of history, this genetic disease is still newly discovered. One of the unique traits of CF is that we have very salty sweat. There’s even evidence of CF in the Middle Ages with this quote, “The child whose brow is salty when kissed is hexed (or bewitched).” In 1938, Dorothy Andersen named the disease ‘cystic fibrosis of the pancreas’ because she studied children dying before their first birthday of malnutrition even when given food and nutrients. We know now that CF affects most organs, including the pancreas and, most devastatingly, the lungs. In 1989, only nine years before I was born, a team of researchers found the first disease-causing CF gene mutation. This discovery was a breakthrough in human genetics.

CF is so individualized, but now, some with CF are cultivating ‘normal’ lifestyles. With respiratory therapy, medications, and a gene modulator, I’m able to run our lodge Steamboat Landing in NY, work in real estate, be a part of a church, meet up with friends, go to the gym, and do many other everyday things that may not have been a part of my life if I was born years earlier. As I learned more about the history of CF, I also realize that the funding behind the science in treating CF was possible because of families like ours who fundraised.

There is a definite need to continue fundraising because there is no cure. We’re fundraising for those who are younger than I am, so they don’t have to experience the same difficulties I did. We’re fundraising for those who are older, living with CF, who have irreversible damage to their lungs and who are dealing with the difficulties of aging with CF. We’re fundraising so that everyone with CF can say, “I used to have cystic fibrosis.” The progress made by the Cystic Fibrosis Foundation is not only getting us closer to a legitimate cure but also paving the way for other similar orphan diseases that lack research and funding. Fundraising today is just as crucial as it was decades ago.

Thank you for your donations as we continue to hope for a cure!

Ethan Vander Molen

Your donations to events like Cornhole for a Cure and Great Strides make a difference. Consider supporting us again. The reality is that CF is still a complicated disease that can change the course of your health quickly. Many still experience the extreme hardships of this disease.  We need a cure! We look forward with hope that in the next quarter century, there will not be a life expectancy number and instead, a cure for ALL living with Cystic Fibrosis!

THANK YOU, Ethan (and Jeff & Sarah Vander Molen)

For more information: molenland@aol.com, 973-519-6645 (Call or text Sarah)

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