My Great Strides Story
Barbara D'agostino
Fundraising for Atlanta Great Strides
Barbara D'Agostino
Many of you know that my daughter, Emma Hope, was born with cystic fibrosis, a rare genetic disease that affects the lungs, sinuses, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure. Because of damage to the pancreas and digestive system, CF also makes it difficult to maintain a healthy weight and often leads to complications like diabetes.
Emma's early years included frequent doctor visits, lots of time fighting respiratory infections, countless rounds of powerful antibiotics, and fears of developing antibiotic resistance. She had dozens of sinus surgeries to try to keep infections away and spent hours each day taking treatments to try to stay healthy.
Emma's early years included frequent doctor visits, lots of time fighting respiratory infections, countless rounds of powerful antibiotics, and fears of developing antibiotic resistance. She had dozens of sinus surgeries to try to keep infections away and spent hours each day taking treatments to try to stay healthy.
Then in her early 20s, a new type of drug that treats CF at a cellular level was approved. She has now been taking this class of drug for 10 years, and it has been completely life-changing. Instead of getting worse each year, her disease has not only stabilized, but improved. She was able to graduate college, then earn her PhD, and now she's able to live her life as she wants - working as a scientist and spending her free time riding horses, training her dog, and spending time with friends and family.
But we aren't done yet. Trikafta, this incredible drug, is not a cure. There are still 10-15% of patients with CF who have not been able to experience the gift of health that Emma has been given over the past decade, because they are not eligible to take this type of drug. The CF Foundation is committed to ensuring that we keep working so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
Now more than ever, it is so critical that we continue to fund life-saving science. The work of the CF Foundation and their partnerships with the NIH, FDA, and pharmaceutical companies committed to CF have been directly responsible for improving CF outcomes by leaps and bounds. By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
Comments