Hi, I'm Drew. I am 14 years old, and I have cystic fibrosis. I was diagnosed when I was 10 days old with a severe genotypetype of CF. I have been working hard every day of my life to slow the progression of my disease. Thankfully, all the medications and the therapy I do keep my lung disease under control. Unfortunately, there are no proven medications to treat the other medical problems I have. I have severe sinus disease. I have had four sinus surgeries to keep them as clear as possible, while I wait to have the next one. Just this past year, I was diagnosed with Cystic Fibrosis Liver Disease. I take a medication twice a day to hopefully clear my liver ducts and prevent more cirhosis. I will eventually need a liver transplant, as I suffer from portal hypertension and an enlarged spleen. The worst part of my CF Liver Disease, is that I cannot play contact sports or exercise too hard. I do play baseball, and I wear a spleen protector just in case, because I am at high risk for bleeding internally. Living with Cystic Fibrosis is not easy, but I live a very happy life! I have the best family and friends, and they are always there to support me when I need it.
Cystic Fibrosis is a progressive disease, so the older I get, the sicker I get, and I need a cure as soon as possible! Researchers have been working hard to find drugs to work in the cells of our bodies to combat the problem where it occurs. Some people with CF are already using drugs that are enabling them to live normal healthy lives! This is so exciting! I am so close to my miracle drug! There is a clinical trial in stage three development right now, that is targeted for people like me. By the beginning of next year, I may have access to the drug! I need your help to get my drug as soon as possible! The trials cost money, and the drug development is very expensive. We have raised a lot of money over the past 12 years, but our work is not done. There are still so many people who suffer like me. We cannot rest until EVERYONE has a CURE! If you can donate to my team I would really love that! Just click on our team and help add tomorrows!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day just to breathe. We walk for them. Will you join us? To become a member of our team, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. We will not rest until all those with cystic fibrosis have a cure. The time is now. Together, we can conquer this disease.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.