On April 26, the FDA approved Trikafta for ages 2-5. Trikafta is a life changing medication for many living with Cystic Fibrosis. It will improve the longevity and quality of life for many of those living with CF. Trikafta being approved for this age group is HUGE. It means that children with CF can get on this life changing medication at a young age which will prevent damage from occurring and will ultimately reduce the number of hospital stays, and other treatment burdens. None of this would be possible without the numerous years of fundraising that occurred before we knew about Rowland’s diagnosis.
But…Rowland along with about 10% of the CF population do not have access. Rowland doesn’t have access because of his rare variants. Others cannot tolerate the side effects of Trikafta.
So why do we walk? We walk because while Trikafta is a miracle, Rowland does not have access and it is not a cure. We walk for the other genetic therapies that can become a reality and increase Rowland's lifespan. We walk to ensure that modulators like Trikafta continue to be studied to improve side effects. We walk to support the CF Foundation's research priorities. One priority that I am really passionate about it is to improve health equity in CF populations. And of course we hope for a cure and we believe one will happen in our lifetime.
Please consider walking with us or making a donation!
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.