Olivia was diagnosed with cystic fibrosis at 4 1/2. She has responded tremendously to treatments and has made great improvements in her overall health. The hope for the future has never been brighter for children with cystic fibrosis. In January 2012 the FDA approved a drug that treats the underlying cause for one mutation of cystic fibrosis (there are over 1800 different mutations). This began the era of personalized medicine, or drugs that treat specifically a certain genotype. This drug however, only works on 4% of the CF population. It does not work for the most common mutation, which Olivia has. In October of 2016, Orkambi was approved for children 6-11 yrs old. Olivia immediately was put on it and has seen improvements in weight gain, lung function, etc. This drug significantly slows the lung function decline of people with CF with her genotype – but it not a cure. This came at an important time for Olivia’s health, since she had recently had her first hospital admission in Aug of 2016.
The Cystic Fibrosis Foundation works with the companies developing treatments and potential cures to improve the quality of life for people with cystic fibrosis. Because of the work of the foundation, there is hope for all children of cystic fibrosis, and their dreams of living a long, happy, healthy life.
GREAT STRIDES is the Cystic Fibrosis Foundation's largest and most successful national fundraising event. This year, I'm walking in the GREAT STRIDES walk at the Barrington/McHenry walk on June 4th, 2017. Please help me meet my fundraising goal by sponsoring me. Your generous gift will be used efficiently and effectively, as nearly 90 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, care and education.
Making a donation is easy and secure! Just click the "Click to Donate" button on this page to go to make a donation that will be credited to my team. Any amount you can donate is greatly appreciated!
Cystic fibrosis (CF) is a devastating genetic disease that affects tens of thousands of children and young adults in the United States. Research and care supported by the Cystic Fibrosis Foundation is making a huge difference in extending the quality of life for those with CF. However, we continue to lose precious lives to CF every day. That's why your help is needed now more than ever to ensure that a cure is found sooner - rather than later. To learn more about CF and the CF Foundation, visit www.cff.org.
Together, we can make a difference in the lives of those with CF! Thank you for supporting the mission of the CF Foundation and GREAT STRIDES!