Thank you for stopping by to read my CF story. I was diagnosed with Cystic Fibrosis when I was 15 years old. This completely shook my world in the beginning but I am thankful to be a part of such an incredible community of fighters. In 2020 I had the honor of becoming an employee at the Cystic Fibrosis Foundation and make this my day job that i'm so incredibly proud of. Last year I became a mother to a beautiful baby boy, Maverick, and it's in huge part to the new therapies that the foundation has developed. But we'll get to that incredible news soon...
For those of you who don’t know what CF is: it is a progressive genetic disease that causes a thick buildup of mucus in the lungs, pancreas and other organs. This causes serious breathing and digestive complications.
A lot of patients with CF have feeding tubes to maintain nutrition, and many of them have had or will have to have a lung transplant at some point in their life. More than 30,000 people in the United States are living with this disease. And more than 75% of those are diagnosed by age 2.
My story is a little different, since I was diagnosed with CF when I was 15 years old. After being diagnosed I really had to find my “new normal.” Taking dozens of pills a day and spending hours doing breathing treatments. This doesn't include the many nights that I have spent at the hospital for weeks to month long treatments.
Of course, the severity of each individual with CF patient varies so although the treatments are the same they are altered to each individual's circumstance. This is where your donation plays a HUGE part.
The Cystic Fibrosis Foundation supports the research to discover and develop new CF treatments and maintains a pipeline of potential therapies that target the disease from every angle. Some really awesome things have been taking place, too. Several medications have been approved by the FDA that actually target the root cause of CF which has signaled a huge historic breakthrough in how CF is treated.
In October of 2019 the FDA approved a medication by the name of Trikafta that I was approved to take. This medication is for everyone with one copy of the DF508 which is 90% of our population. My life has been DRAMATICALLY different since the first dose of Trikafta. Within 4 months of taking this medication my lung function has increased 27% and I rarely cough. I haven't been hospitalized in over TWO YEARS -- A MIRACLE. Although this medication is not a CURE and patients still live life with this horrible disease, and all of the treatments and complications that come with it.
It is because of people like you who have been so generous, incredible therapies are being made for people with Cystic Fibrosis.
There is still so much research to be done to one day develop a life long cure for myself and thousands of other cystic fibrosis patients. Please know that your donations are making a great impact on the CF community and we are all so thankful and excited to see what the future holds!
I know I speak on behalf of the entire CF population when I say THANK YOU for caring, and thank you for your generosity.
All my love,