A chance meeting at a CF conference 12 years ago gave me one of the most valuable gifts: my CF Mama friend group. Since then, we’ve invested time in our friendship and supported each other through the laughs and the tears.
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Throughout my life with cystic fibrosis, I never thought about the prospect that I would outlive my loved ones. Now that I have attended some of their funerals, the thought of my own mortality has caught up with me.
Hospice care helped my daughter, Desirée, through her final days.
Addressing variability in newborn screening can prevent missed diagnoses and delays in early care intervention.
I began fundraising and raising CF awareness soon after my son, Aidan, was diagnosed as a baby. After years of successful fundraiser walks, Aidan asked me to stop — opening my eyes to the difference between being a mom of someone with CF and being the person who is living with CF.
Raising three kids in daycare often involves runny noses and mystery stains. As a mom with CF, I’ve figured out how to balance our daily lives with keeping me healthy and daycare-germ free.
Dance was my life, but I had to give it up when my health was in decline. I then found a new way to express my creativity through poetry.
Once I started Trikafta®, I became healthy enough to go to culinary school and become a chef.
By learning how to cook diverse cuisines, I improved the quality of my own meals, ate more, and have been able to maintain my weight.
The Cystic Fibrosis Foundation is providing up to $5 million to develop a method to deliver a healthy copy of the CFTR gene into the lung cells of people with CF that is unlikely to trigger an immune system response.
More than 60 teens from across the country — 25 of whom live with cystic fibrosis — participated online and on Capitol Hill in the Foundation’s Teen Advocacy Day to advocate for the CF community.