Noah's Hope

2023 Great Strides Event for Cystic Fibrosis

My Cause - Finding a cure for Cystic Fibrosis

My son Noah was born with Cystic Fibrosis 16 years ago. Ten of those years were a struggle and a fear of anything that could change the course of his disease. We feared bacteria and mold lurking in our home, school, doctor's offices, and even in our own backyard. Noah had to eat 5,000 calories a day just to maintain his weight and thrive. During these struggles, there were moments of great joy watching our little boy capture the hearts of those who knew him, and he especially captured mine. He never complained about doing hours of treatments a day, eating tons of food, or getting tests done every 2 months. But when he was hospitalized for a month at just 6 years old, and fighting a severe fungal infection in his lungs, it began to set in how very dangerous and scary Cystic Fibrosis actually was. We were thrown into the fight of our lives with a fungus that was hard to treat and threatening his lungs, causing him to have trouble breathing and coughing up brown thick mucus for months. After 6 months of hospital visits, and IV medicines round the clock, Noah had his picc line removed and his lungs continued to improve. Very slowly.

At that time, there were new drugs on the horizon to treat the underlying cause of CF, but none were available to treat HIS mutation. FDA approval was still years away and it was unclear if we had missed the boat for the new drugs to save his lungs and prevent a lung transplant some day. In order for that to happen, his lungs had to stay healthy and not have too much permanent lung damage. But, thankfully, Noah's lungs continued to improve and the damage was minimal.

In 2016, Orkambi was FDA approved. It was helpful, but only corrected the problem about 30%. In November 2019, Trakafta was FDA approved. Noah was approved to take Trikafta in place of Orkambi, and it is correcting the underlying cause about 90%. THIS IS AMAZING! 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 people with CF that DO NOT have an effective treatment! We CANNOT leave them behind. These families and patients need us to keep fighting for them.

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.

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.

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.

Outcomes

The average life expectancy for someone with Cystic Fibrosis has reached 56 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. But we are not done. We need a CURE so ALL people with CF can benefit from this amazing science!

WITH YOUR HELP, CF WILL ONE DAY STAND FOR CURE FOUND! I believe this will be in my lifetime!

2023 Lehigh Valley Great Strides Walk - April 29, 2023

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.