Please help me meet my fundraising goal by making a donation or by buying tickets if you would like to attend the event in person on October 13th. By supporting my fundraising efforts, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.
Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. Sixty years ago, children with CF usually did not live long enough to attend elementary school. Today, because of Foundation-supported research and care, the median survival age of people with CF is over 50. Working alongside the CF community, the CF Foundation has fostered the development of more than a dozen CF treatments and helped add decades of life for people with CF. Yet, many people with CF do not benefit from existing therapies. Our vision is a cure for every person with cystic fibrosis – a life free from the burden of this disease – and we will not leave anyone behind.
To learn more about CF and the CF Foundation, visit www.cff.org. Together, we can make a difference in the lives of those with cystic fibrosis. Thank you for supporting the mission of the CF Foundation!
My Life with CF:
For those who don’t know me, hi – my name is Maria! I was born with cystic fibrosis, but I wasn’t diagnosed until the age of three since newborn screening was not implemented in Ohio in 1996. Throughout grade school and high school, I felt like a totally normal kid (other than the fact that I wasn’t allowed to do things like jump in leaf piles or participate in the mud slide during 6th grade camp due to concerns I might get sick from the bacteria). While I had to do my airway clearance every morning before school, I didn’t mind because it was so engrained in my routine. I would then go off to school, go to practice for whatever sport I was playing (soccer, cross-country, basketball, or track), eat dinner and do homework before I fell asleep to get ready for the next day. Relatively “normal” day.
When I went away to college and had to manage my health on my own is when I started to feel a little bit different from other people my age. Before even stepping foot on Ohio State’s campus, I had to request additional space in a dorm room because of all the equipment that I needed to do my airway clearance. Just like all other college students, I had fun meeting new friends, exploring new places, and taking classes. As freshman year began to wrap up and I was preparing for finals, I remember going to bed one night with a cough that felt different than usual. I went to the bathroom and tried to clear it out, but when I saw the sink was bright red, I truly did not know what to do. It was 1am on a Thursday and I had never coughed up blood before in my life. My roommate ended up taking me to the emergency room. While nothing revolutionary came from that visit, turns out my lungs were inflamed from a bacteria I had been battling for years, it was still one of the scariest moments for me. The summer after freshman year, I received my first dose of IV antibiotics. Didn’t feel quite so normal anymore.
Throughout the remainder of college, I was constantly on oral and inhaled antibiotics and had to do several courses of IV antibiotics. I almost didn’t go back at the start of my senior year because of how poor my health was – at one point my lung function was only 35% of what it should have been. I remember needing several rest stops when walking through the airport after returning from a vacation that summer. Luckily an intense course of IV antibiotics got me healthy enough to go back to school. Then on an even luckier note, I was randomly selected to participate in a clinical trial for a next-gen modulator therapy. The day of my enrollment, my whole family came to the appointment – we were all so excited. The first 6 months of the trial consisted of a double-blind placebo-controlled study which means I had a 50/50 chance of getting the medicine and I wouldn’t know whether I was getting it or not. When I went back to school and proceeded to live life, I didn’t notice any changes. While I was a little disappointed, I was happy that at least my health had stabilized, and I wasn’t declining.
Then at the start of my second semester of senior year, I rolled into the open label portion of the study which meant I was guaranteed medication. Within 2 weeks, my lung function had sky-rocketed 13%!! Never had that happened to me before – not even after a course of IV antibiotics!! Not only did my lung function increase to high school level lung function, but I have been able to maintain that for the last 4 years – unheard of!! That year I ran a half marathon – the year before I could barely walk across the airport without needing to stop to catch my breath. Since then, I have run a full marathon and am participating in the Tuna Run (a 200-mile relay race) this year! While I always thought I was going to have to move back home after college due to my health, I shockingly had the confidence to take a job at Biogen in Research Triangle Park, NC where I still currently work. Eventually the medication got approved and is now known as Trikafta. I know there are others with CF who, like me, gained a new level of independence thanks to Trikafta. This medication came at a crucial time in my life, and I am forever grateful to the people at Vertex and the CF Foundation for developing and funding life-changing drugs.
While I have been so fortunate to have benefited from the development and approval of Trikafta, I know that there are still too many people out there with cystic fibrosis that do not have this option. I cannot fully celebrate what this medicine has done for me knowing that there are still so many others out there with no options. Because of what I experienced, I hope to be able to pay it forward to significantly improve the lives of patients with devastating diseases – it’s why I chose to work in biotech and it’s why I ask for you to consider donating today. The CF Foundation has played a critical role in funding the development of these new life-changing drugs and treatments for people living with cystic fibrosis. Please support the critical work of the CF Foundation by donating today. We must continue to raise funds until we can say that CF stands for “Cure Found” for 100% of CF patients.