When I was diagnosed with Cystic Fibrosis (CF) at the age of 9, the life expectancy was 35 years old. I am almost 37 years old now and this is the healthiest I have been in my entire life. My lung function is 100% and my doctors say I will live a full-healthy life. The only reason I have gotten healthier as I have gotten older is because of transformative innovations in medical research funded by the Cystic Fibrosis Foundation. One of these innovations is a genetic altering medication called Trikafta. Not only has Trikafta improved my quality of life, but it has also allowed me to go off other CF medications and treatments. Goodbye enzyme pills, nebulizer and vest. Hate to see you all go!
Unfortunately, Cystic Fibrosis is still a very serious disease that can have catastrophic consequences. Many CF patients live day-to-day with reduced lung functions and require several trips to the hospital a year. Patients with more severe cases may even need lung transplants or can die of complications. Trikafta is a miracle drug that can help prevent some of these scenarios, but not all CF patients can take Trikafta since they have rare CF genotypes that are unresponsive to treatment. Trikafta is a giant leap in the right direction, but it is also not a cure.
I am on the healthier end of the "CF spectrum" and still have my fair share of battles with the disease. Even this past week, I had my fifth CF-related stomach blockage and had to be admitted to Albany Medical Center. The only way to ensure all CF patients can live a full symptom-free life is to find a cure.
We hope you will support us this year by joining our team and donating as we celebrate the great strides that have been made in CF research. The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from every angle. Their focus is to support the development of new drugs to fight the disease, improve the quality of life for those with CF and ultimately find a cure for all with the disease.