|Brady is 7 years old, and LEGO obsessed! Sometimes it feels like my whole world looks like this!|
|A newspaper article from our battle with the Idaho Legislature.|
If you are reading this blog, you might already know that my son Brady has been taking Kalydeco for over 3 years, and that it has changed our lives. But did you know that the technology that led to the discovery of Kalydeco—“high-throughput screening,” was developed by the National Institutes of Health? Did you know that targeting a genetic mutation for correction wouldn’t be possible without the NIH first mapping the human genome? Without the basic science that has helped us unravel the mysteries of our DNA, we wouldn’t even be able to DREAM of the kinds of “genetic modifying” drugs like Kalydeco that are being crafted today. Just to be clear—the CF Foundation funds nearly 100% of medical research for CF. The National Institutes of Health does NOT give a single dollar to the CF Foundation, or “orphan” (rare) disease research. They DO, however, fund basic science projects that enhance our understanding of genetics. They DO develop new technologies that could accelerate drug discovery for all diseases. They DO fund generalized research projects that may eventually be applicable to CF. The importance of funding the NIH has ALWAYS been a priority for CF advocates.
"The #CysticFibrosis community needs access to clinical trials, @SenTedCruz Pass S. 139!! #cfAdvocacy @CF_Foundation"
Thank you wonderful people!
|With my RAD new Co-Chair Melissa Shiffman on Capitol Hill last week!|
|Chatting up CF advocacy at Sacred Heart's Family Ed day a few weeks ago. Do I ever shut-up? NOPE! |
And neither should you!