Learning that my son, Rowland, has two rare cystic fibrosis variants and is currently unable to access highly effective modulator therapies was emotionally challenging and isolating for me. Then, I was introduced to another mom who could truly understand and relate to our experience. I am so grateful for not only the support we can provide to each other, but also for the friendship that grew from our connection.
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Preparing for the school year with cystic fibrosis involves careful planning and advocacy. Since my daughter, Desi, started school, I’ve learned about how to best prepare Desi, her teachers, and school administration to help ensure her education and health thrive.
After being the primary caregiver to my son for so long, I was surprised by the many emotions that came with his transition to adulthood. But I’ve learned these complicated feelings are just an opportunity for us to grow closer.
I thought I was well-prepared to have my third baby boy, but when Oliver was diagnosed with CF, everything I knew went out the window. Though the journey has been isolating at times, my family has found our new normal with support from others in the CF community.
Clinical postdoctoral research fellowships are offered to support postdoctoral research training related to cystic fibrosis. These awards are intended to enable training in new research areas and methods to advance the scientific knowledge of the applicant and to collect data to enable their transition into an impactful research career.
We couldn’t wait to take our daughter home from the hospital. But when the time finally came to bring my daughter home, I began to lose confidence in myself as I tried handling all the medications and formula. With time, I built a great routine for my family and learned some tips and tricks to share with other new parents.
The Cystic Fibrosis Foundation is requesting applications with a letter of intent for innovative registry-based analyses that aim to test novel methods to advance the use of the Foundation’s Patient Registry.
I felt unrelenting hope watching the first plenary of this year’s North American Cystic Fibrosis Conference. As I learned about progress that has been made in sickle cell disease, and how those learnings may help us develop a genetic therapy for CF, it showed me that the CF community is supporting people like me who can’t take modulators.
The Research Additional Mentoring Program (RAMP) Award is designed to enable promising early-career physician scientists seeking additional research mentoring outside of their home academic institutions to enhance their clinical or translational research proficiency and support their development of the necessary clinical research capabilities to become independent investigators.
Foundation to fund up to $110 million for collaboration to accelerate the development of genetic therapies for CF