Our Great Strides Story
Bryce Porter Bungard was born April 8, 2019. Two years later, almost to the day, his baby sister Elsie Marloes was born on April 18, 2021. At two weeks old, they were both diagnosed with Cystic Fibrosis. In 2019, when Bryce was diagnosed the news came as quite a shock to his family, but they did what they do best-they rallied! They joined with the CF Foundation to help raise awareness and support the foundation’s mission to cure CF. In 4 short years, since joining forces with the foundation, Bryce & Elsie’s Buddies has raised almost $105,000! We couldn’t have done it without the help of our friends and family.
In October of 2019, the FDA approved a triple combo therapy called Trikafta, a new, highly effective CFTR modulator therapy that treats the underlying cause of CF. TRIKAFTA was approved for people 12 and older who have at least one F508del mutation, which Bryce and Elsie both have! In June of 2021, they approved Trikafta for 6-11 year olds. The approval of TRIKAFTA means that more than 90 percent of people with CF could eventually have a highly effective treatment for the underlying cause of their disease.
This past year, because of our efforts TRIKAFTA was approved for 2-5 olds!! Now both Bryce and Elsie are taking this life changing medication!
Since taking his first dose of TRIKAFTA on September 13, 2023 Bryce has had incredible improvements to his health. In 2022, Bryce had a 30 day hospitalization because of a CF exacerbation. This caused pretty serious damage to his lungs, which is referred to as bronchiectasis. Because of TRIKAFTA, a year later, his current CT scan showed a reversal of this lung damage!! In addition, when he was diagnosed at two weeks old, his sweat test level was in the 90s. (To be positive for CF, this number has to be over 60) after just three short months on TRIKAFTA Bryce’s sweat test dropped to 38!! This number tells us that TRIKAFTA is working and that his body is functioning properly.
Elsie is doing great as well! Just a few short months, her sweat test went from 102 to a normal level of 32!
Since starting, both Bryce and Elsie have been able to get rid of sicknesses on their own without having to take antibiotics. We could not have gotten here without your help but there is still so much work to be done. About 10% of people with cystic fibrosis do not qualify for this medication because of their mutations. Not only that, advancements are being made in genetic therapy research which brings us closer and closer to cure for all people with CF.
We are so thankful for everyone who continues to help raise funds and awareness so one day CF can 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.