Ähnliche Videos
1.858 Aufrufe · |
Ähnliche SeitenAlle ansehen
Videotranskription
When I was younger, I always dreamed of being a talk show host an Fbi agent or a high-risk obstetrician. I had no Grand plans of becoming a patient advocate that was nowhere in my life plan, but neither was cystic fibrosis. Cystic fibrosis is a Progressive fatal genetic disease that primarily affects the lungs and digestive system and leads to life threatening lung infections. When the CF gene was discovered in 1980, - nine, the scientist promised us five years until Five years came and went 10 years 15 years and we we lost faith in in science. It was like we were all on this big sinking ship. So in 2012, the first round of breakthroughs came for roughly four percent of the seats community and it was earth-shattering. Then they came for 40 percent of the CF community and out 90 percent of the CF population has life-saving therapies. people are getting a second lease on life getting married, having babies running marathons even buying life insurance. But for me and others like me, there's still nothing we fall in. 10 percent that doesn't benefit from any of these breakthroughs. I spend roughly three to four hours a day doing medical treatments just trying to delay progression of my disease. I have 30 - one percent lung function, but the thing that is scariest is that no amount of hard work or discipline or love or will and effectively halt Beast of a disease. We decided that we had to take matters into our own hands and that was the birth of Emily's entourage. In the past eight years, we have built a foundation of the future, led by patients and families partnering with the world's top CS scientists and biotech companies. Emily's Anchorage has awarded over Four million dollars to 17 research teams across the globe and even launched a CFP gene therapy company. Our work has the potential to help not only people with ACS, but the roughly 30 million people worldwide living with the disease caused by the same genetic mutation that includes certain types of muscular dystrophy inherited blood disorders even cancer. We have come a long way. 90 percent is amazing, but it's not good enough and every single day we are losing beautiful lives to this disease. For us, this is a race to get life-changing breakthroughs for a hundred percent of the CF community, and that is what we're fighting for. We need your support and we need it now.











