2022 Great Strides Event for Cystic Fibrosis
My Cause - Finding a cure for Cystic Fibrosis
My son Noah was born with this devastating, genetic disease, almost 16 years ago. I made a promise back then, that I would save his life and keep him safe. Many nights I wondered if I could keep my promise. Over the past 15 years, Noah has endured many tests, IV meds, hospitalizations, scary lung infections, and overall, many unknowns that still threaten to take away the joy we feel, even with new medications.
Thankfully, 90 cents of EVERY dollar donated to the Cystic Fibrosis Foundation, goes directly towards life saving research that is treating the genetic defect, not just the symptoms! This disease is being changed by YOUR love and support.
In November 2019, Noah was approved to take Trikafta. It’s a drug that treats the cause of the disease. It’s approval allowed up to 95% of people with CF to have an effective treatment. This is science at its best! However, there are still 5% of patients that don’t have anything like this. If Noah was in that 5%, I would hope that everyone would continue to fight for us. This 5% is counting on us!
A cure is possible for Cystic Fibrosis!
Your donation is tax deductible and some companies will also match your donation. The Federal Government does not provide any federal funding for Cystic Fibrosis (CF is an orphan disease - only 30,000 people in our country have CF), therefore we rely on private donations and fundraising.
What is Cystic Fibrosis?
Cystic Fibrosis causes thick, sticky mucus in the body, due to a protein in the cells that doesn't function properly. This results in lung infections that eventually lead to progressive, permanent lung damage. It also affects the pancreas and liver and most other organs in the body. On average, a CF patient loses 2% of lung function every year. Most CF patients will eventually need a double lung transplant if we don't get new medications to STOP the progression of this horrible disease.
The average life expectancy for someone with Cystic Fibrosis is about 40 yrs old. According to the Cystic Fibrosis Foundation, "in the 1950s, children with CF were not expected to live long enough to attend elementary school". Thanks to fundraising like this, and the CFF, the life expectancy continues to rise!
WITH YOUR HELP, CF WILL ONE DAY STAND FOR CURE FOUND! I believe this will be in my lifetime!
2022 Lehigh Valley Great Strides VIRTUAL Walk - April 30, 2022
Please join Noah's Hope and help us in our daily fight against Cystic Fibrosis at Cedar Crest College 100 College Drive, Allentown, PA 18104. Check in 9am, Walk 10am.