Cornhole For a Cure - SATURDAY DATE CHANGED DUE TO RAIN - Sunday May 21 1:00 Visit this link if you are interested in information or signing up a team. https://passion.cff.org/cornholeforacure
Walk to Cure Cystic Fibrosis - Sunday May 21 - Van Saun Park, Paramus 11:00am
When I was born in 1998, my parents were told that the median life expectancy of someone living with CF was 30 years old. This has just been updated that children born with CF today have a median life expectancy of 56 years old. It has always been strange living with a life expectancy. My personal struggle living with CF has been fairly difficult, but my parents never put this limit of life expectancy on my life. We all believe and trust that God is in control of the journey He has for all our lives.
Looking at the past 25 years, it is awesome to say that fundraising has made a difference. The Cystic Fibrosis Foundation has played an essential part in contributing to an improved quality of life that didn’t seem possible years ago. I’ve been taking Trikafta which is a gene modulator that targets the defect caused by my specific genetic CF mutations in the cells of my body. My lungs are staying stable, and overall, I am doing really well. Trikafta isn’t a cure. I still have nebulizers, need airway clearance with my vest each day, and take enzymes to help digest food. I haven’t needed IV antibiotics for a few years now and was able to have the port-a-cath, which I have had for 8 1/2 years, removed in December, 2022!
I don’t take for granted that I can enjoy working at our lodge in the Adirondacks and working in real estate. I take advantage of exercise and outdoor activities. I am thankful that I can plan and think about the future. I also recognize I could not do this without your support. Your donations to events like Cornhole for a Cure and Great Strides make a difference. Consider supporting us again in reflection on these 25 years. 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, and there are still families who lose their young children to CF. 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: email@example.com, 973-519-6645 (Call or text Sarah)
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.