We need more FDA approved treatments for cystic fibrosis. We are running out of time.
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Cystic fibrosis (CF) is a horrible and debilitating disease that affects many parts of the body, including the lungs, liver and pancreas, among other organs. It’s also incredibly rare – only 30,000 Americans have it and there are just 1,000 new cases every year.
I know this disease all too well.
I have two daughters who suffer from cystic fibrosis. Keeping them mentally strong to deal with CF while also keeping them physically healthy has been the challenge of my life. CF is a daily battle with a chronic illness that threatens another bout of pneumonia or a new infection that could threaten my daughters’ lives.
My girls, and thousands of other young adults with CF, need the drugs the FDA is currently considering. Time is not on our side. I always ask those in positions of leadership: If your child was in the position that mine are in, would you make these drugs more easily available?
In recent years, the Food & Drug Administration (FDA) has approved groundbreaking new treatments that help patients with specific genetic mutations of the disease. It is truly a new day for many families living with CF, including mine, who are in a race against time. The average lifespan is late 30s to early 40s, but the promise of new medicines will help ensure that people with this disease live longer and healthier lives.
The FDA should be commended for its work on past CF treatments, but we can’t stop now.
Please sign my petition today to encourage FDA to quickly review and approve precision medicine treatments for CF where strong science and sound data exist.
We simply don’t have time to wait!
Your support means everything to me and the thousands of others fighting this horrible disease.
Today: Laura is counting on you
Laura Bonnell needs your help with “Janet Woodcock, M.D.: We need more FDA approved treatments for cystic fibrosis. We are running out of time.”. Join Laura and 2,429 supporters today.