Isabel Graves
Family & Friends,
It is time for the Great Strides Cystic Fibrosis walk!! As many of you know, my family and I have participated in this walk since 2004, after my sister, Emily, was diagnosed with Cystic Fibrosis at 10 months old. CF is a genetic disorder that affects the lungs, pancreas, and other organs.
Emily is now 21 years old. She underwent a bilateral lung transplant in May 2023 that is going well. Emily also recently started with an insulin pump that has been a game changer with managing her Cystic Fibrosis related Diabetes. As for her spare time, Emily likes taking long walks around New York City and going to Brooklyn for coffee. In the fall, Emily plans on going back to school online at Arizona State University for visual/social media communications.
In 2021, my daughter, Isabel, was diagnosed with Cystic Fibrosis as well, bringing even more meaning to the fight for a cure. Isabel is 2.5 years old and was diagnosed at 8 days old with the newborn screening. This past year, Isabel had her first bronchoscopy, started Trikafta, and had a g-tube placed. She is a silly kid with a detail oriented mind that enjoys figuring out how things work. Isabel also enjoys jumping on the trampoline, dancing with mom, going to the gym with dad, and going to work with dad.
The Great Strides walk helps the CF Foundation raise money for research that has changed what living with CF looks like. This research has expanded the life expectancy from 30s to 50s in a decade and has brought forth some life changing medications like Trikafta. Trikafta is one of the gene modulators that is available to CF patients. However, not all CF patients are able to benefit from these medications, and these medications are not a cure for CF. This is why the CF Foundation continues to do research. Some of this research includes gene therapy, expanding the usage of gene modulators, and looking into the complications of CF that include infection, inflammation, mucus, digestion, and diabetes. There is so much more progress to be made.
Please consider donating to help us find a cure for CF. Any amount is appreciated!
'Til CF stands 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.