Hi there! My name is Liz Philbrick. I have two beautiful children who are living fully with cystic fibrosis. Joshua is 13 and Emma is 11 years old.
Joshua and Emma have had another fantastic year, and we are ready to walk 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 one year now, and Emma has been improving on the medicine Kalydeco. These are medications that have come on the market which treat the basic defect caused by CF. We, along with our physicians, decided to treat the kids 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! Joshua had a test done to see how well Trikafta is working for him, and it showed that it is making it as if he doesn't even have CF at all! This coming year Emma will become old enough to begin taking Trikafta as well. In order to have CF, you must be born with two disease causing mutations. One is inherited from mom and one is from dad. The kids inherited a different one from each of us, but the combination still causes CF. Kalydeco works to fix the defect cause by one of the mutations our kids have. Trikafta will work to correct both of them. Both of these medicines 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! Ninety cents of every dollar donated goes directly to research to make this possible. Someday, CF will stand for "cure found." Kalydeco and Trikafta are miracle drugs, but they are not considered a cure. All previously taken medications and therapies must still be taken. Until the day a cure has been found we will keep raising money and awareness. Please help us by making a tax deductible donation to help us reach our fundraising goal today! Thank you in advance for your support!