On Sunday, June 2nd we will be walking in our annual Great Strides Walk-A-Thon, a walk to cure Cystic Fibrosis. As you know, our 30 year-old son, Bobby faces a daily battle against this deadly disease. Now in its 31st year, the walk will be held at the Adelphi University, Garden City.
Cystic Fibrosis is a chronic, progressive, genetic disease which affects the pulmonary and gastrointestinal systems. Nearly every CF drug available today was made possible because of Foundation support and the generosity of donors and friends across the country. Your donation ensures that we are able to continue exploring cutting-edge research that could one day lead to a cure. Together we are transforming the faces of this disease from one of despair to one of hope.
The U.S. Food and Drug Administration (FDA) approved a new drug February12th, that treats the underlying cause of cystic fibrosis, expanding the number of people with CF who could benefit from cystic fibrosis transmembrane conductance regulator (CFTR) modulators. This approval paves the way for new, more effective triple combination therapies (treatments consisting of three different modulators, including tezacaftor) scheduled to begin late stage clinical trials in the next several months. In late stage clinical trials, people with two copies of the F508del mutation who had taken the tezacaftor/ivacaftor combination improved their lung function by 4 percentage points compared to those taking a placebo. Participants in the studies also experienced improvements in other key measures of the disease, including a 35 percent reduction in exacerbations (a sudden worsening of symptoms that requires treatment) and an increase in the measurement used to assess quality of life.
With the science moving forward exponentially, we are at a critical crossroad (literally in a footrace with time) to save precious lives. Your support is appreciated and vital to our success in crossing the finish line. The future of people with CF depends upon continued support from volunteers and donors, and wise investments in science that will allow those with CF to enjoy long, healthy lives, while pursuing their goals and dreams to the fullest. For our CF kids and young adults, “The future is now”.
Your continued support during these tough economic times is urgently needed to complete our mission to successfully defeat CF, our nation’s #1 genetic killer of children and young adults. Please join our team or donate
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.