Hey everyone! I'm Alex and I was diagnosed with Cystic Fibrosis at birth! I have been involved in Great Strides for 12 years! For those of you who don't know what CF is: it is a progressive genetic disease that causes a thick buildup of mucus in the lungs, pancreas and other organs! This causes serious breathing and digestive complications.
More than 30,000 people in the United States are living with this disease. Although the severity of each individual with CF varies the treatments are the same and just altered to a patient’s specific needs – this is where the help of your donations help tremendously!
In November 2019 I started a new FDA approved medicine called Trikafta – this medication is for everyone who has one copy of the DF508 which is 90% of the CF population but there is still that 10% we need a drug for, that’s why we keep fighting and raising awareness! My life has changed dramatically since taking Trikafta, I honestly didn’t know three small pills would have such an amazing impact on my life! Although Trikafta has helped in so many ways like I’ve said before it’s not a cure and this past year and a half has been a roller coaster health wise. About 5 months after starting Trikafta I cultured MAC (Mycobacterium avium complex) one of the worst bacterias someone with Cystic Fibrosis can get. The standard treatment is a year of oral/iv antibiotics and then another 6-7 months of them even after you don’t culture it anymore to make sure it’s really gone. I’m still culturing it and I’ve tried every type of antibiotic routine the Drs can throw at it (even started seeing a specialist in Denver) the bacteria is slowly eating away at my lungs and it is likely we will begin the transplant process sooner rather than later. This is why fundraising is so important, to help create new drugs that could possibly help beat bacterias like MAC
Your donations are making such a great impact on the CF community and we are so excited to see what else the future holds for us!
Please support me!
Your participation will help us get one step closer to ending this terrible disease. Let’s make CF stand for Cure Found.
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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.