The Cystic Fibrosis Foundation has launched a new program that will fund 60 additional research coordinators to help speed the progress of CF clinical trials throughout its Therapeutics Development Network (TDN).
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When there is more than one person with CF in your school, it is essential that they be kept a minimum of 6 feet (2 meters) apart from each other. Germs can spread as far as 6 feet through droplets released in the air when people cough or sneeze.
New Bill Would Remove Financial Penalties for Participating in Research Studies
This morning, Vertex Pharmaceuticals announced the results from the Phase 3 clinical trials of ivacaftor (Kalydeco™) and lumacaftor (VX-809) in people with two copies of the F508del mutation.
Last year -- just one week before my 12th birthday -- my doctor reached out to my family and asked me if I wanted to enroll in a clinical trial. Here's why I decided to say yes.
As a frequent public speaker, I was surprisingly nervous the day before I spoke to my kids' classmates about the realities of cystic fibrosis several years ago. Luckily, my kids knew just what to say to calm my nerves.
About a year and a half ago, I started preparing for three students with cystic fibrosis at the school where I work as a school nurse. Here's an update on how things have been going.
Sending your child to kindergarten for the first time is hard enough, but when your child has cystic fibrosis, it is even harder. Here's how I handled my daughter's transition to kindergarten and the lessons I learned along the way.
As children with cystic fibrosis transition toward greater independence at school and at home, they will also take greater responsibility in managing their disease.
Back in 2015, my genetic sequencing revealed one nonsense mutation. But recently, I learned I have another nonsense mutation that may not have been identified when my genes were first sequenced. As more mutation-dependent therapies are developed, it’s crucial that people with CF have accurate information so they can make informed decisions.