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.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.