I was determined to make my dream of becoming a mother a reality despite the potential risks that pregnancy can cause for people living with CF. It certainly wasn’t easy, but the challenges of pregnancy and CF were rewarding in the end because I now have two wonderful girls who call me mom.
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CF Foundation President and CEO Robert J. Beall, Ph.D. testified today before the House of Representatives' Energy and Commerce Committee at a hearing entitled, “21st Century Cures: Incorporating the Patient Perspective.”
Although I'm glad that my two children with cystic fibrosis will soon have the opportunity to try Trikafta, I am also a little worried about whether they will have side effects and how well they will do on the drug long-term.
When Brady was diagnosed with CF, I felt like I'd been thrown into a river without a paddle. But then I realized my “paddle” was CF advocacy, and it could help steer our boat in the right direction.
There have never been as many new CF drugs in development as there are today. In the second plenary at NACFC, Dr. George Retsch-Bogart outlined the progress we've made, the road ahead and the changes needed to make it all possible. Read on for my key takeaways.
As Congress weighs budget appropriations, we look at long-term funding for the National Institutes of Health. We decided to sit down with the Foundation's senior vice president of research affairs to learn more about why the work being done at NIH is so important in the search for a cure for CF and other serious, rare diseases.
Last week I travelled to D.C. to serve on a panel discussing the recent developments in precision medicine. I've got to say, it was pretty neat.
When I was pregnant in the early 2000s, there was little information available about cystic fibrosis and pregnancy, and I didn't even know what concerns to address with my providers. I am glad more women with CF have shared their family building experience.
Although I didn't have cystic fibrosis-related diabetes, I avoided dealing with my blood sugars. Now that I do, I feel stronger physically and emotionally.
Because of the medications I must take as a result of my lung transplant, I thought it might be too difficult to conceive a baby through in vitro fertilization. I was wrong. I'm expecting a son in November.