Hi there! My name is Liz Philbrick. I have two beautiful children and a beautiful nephew who are living fully with cystic fibrosis. My children are Joshua and Emma. Joshua is 16 and Emma is 14 years old. My nephew, Ezra, is almost 2!
Joshua, Emma, and Ezra have had another fantastic year, and we are ready to walk IN PERSON again with family and friends to raise money for cystic fibrosis research! So many wonderful advances have been made in treating CF. Joshua and Emma are both directly benefiting from a medication made possible by your donations over the years. Joshua has seen amazing results on Trikafta for four years now, and Emma has been taking it with similar results for just over two years. We are hoping and praying this medication will do the same for Ezra when the time comes for him to take it. Trikafta is a medication that has come on the market which treats the basic defect caused by CF. We, along with our physicians, decided to treat Joshua and Emma due to mild progression seen in their disease. Since beginning treatment, both kids have seen improvement in their overall lung health and tremendous weight gain! Both Joshua and Emma had a test done to see how well Trikafta is working for them, and it showed that it is making it as if they don't even have CF at all! This medication which can greatly improve their symptoms and, we hope, lengthen their lives has been made possible by people like you! CF research receives no government funding, so all research is funded by donations.
Joshua once wrote in response to a questionnaire at a clinic visit that if he could change anything about CF it would be that he didn't have it. Emma once told me she wishes she could know for just a day what it is like not to have CF. We will not stop until those dreams are made reality! We are getting closer every day! Ninety cents of every dollar donated goes directly to research to make this possible. Someday, CF will stand for "cure found." Trikafta is a miracle drug, but it is not considered a cure. However we have been able to take the kids off some of their daily medications which greatly improves their quality of life. Trikafta also is not for everyone with CF. Only people with certain mutations can benefit from it. We will not stop fighting until all people with CF have the same hope we now have for a long, full life for our kiddos and our nephew. Please help us by making a tax deductible donation to help us reach our fundraising goal today! Thank you in advance for your support!
Connect With Us
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.