Our grandchildren...
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 3 short years, since joining forces with the foundation, Bryce & Elsie’s Buddies has raised almost $80,000! We couldn’t have done it without the help of our friends and family.
In October of 2019, the FDA approved a new triple combo 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.
Just recently TRIKAFTA was submitted to approval to the FDA for ages 2-5 and are hoping for approval early Spring!!! This is such exciting news for the CF community!
2022 started out as a difficult year for Bryce. After repeat illnesses that he couldn’t quite seem to kick, Bryce was hospitalized for a total of 30 days at Children’s Hospital where he received IV antibiotics. Because of the sicknesses, some damage was done to his lungs. His parents fought like crazy to get him early use of Trikafta based on medical necessity and on September 13 he took his very first dose! Since then he has been eating and gaining weight like a champ, he hardly ever coughs which is quite the change from before. Trikafta has completely changed his life and it’s because of the support of all of you!
Today Bryce is a thriving 3 year old who loves running around, playing with his big brother Rowan, superheroes and Buzz Lightyear. Elsie is a happy 1 year old who loves acting like a little momma, running around and telling her brothers to “stop it”! Their diagnosis was life changing, but with the support of their family, it isn’t changing their life! They continue to amaze their doctors with their overall good health!
We are so thankful for everyone who continues to help raise funds and awareness so one day CF can stand for Cure Found!
We are so thankful for everyone who continues to help raise funds and awareness so one day CF can stand for Cure Found! If you would like to donate to our team or walk in the event on May 20, 2023 PITTSBURGH GREAT STRIDES | Location: Point State Park please click on the link or you contact me personally. Thank you
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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.