Hello from the Webster's! Thank you for taking a moment to check out our National Team Lucy Great Strides site. We are looking forward to an amazing "Great Strides Season" and would love to have you and your family involved in any way possible! Please feel free to contact me (Christy Webster, email@example.com) anytime with questions or for info about walks & other CF events in your community.
Chances are, if you & I have ever talked about Cystic Fibrosis, you've probably heard me say how approx 1 in 30 people are carriers of the disease and for a person to have it they generally must have both parents as carriers (Randy & I are both carriers). You've also probably heard that the life expectancy used to be very short because of damage to the lungs and digestive system from thick sticky mucous but how new therapies have extended the "median predicted age of survival" to the early 40's... You might even know about the exciting drug our daughter Lucy is able to take called Kalydeco! The reason Lucy's CF is able to be treated so well with this drug is because the CF Foundation invested millions of dollars in a pharmaceutical company that discovered a way to correct her cellular defect. This is incredible! Our daughter's future is full of optimism and really her future is just as bright as her smile!
But, what you may not know is that this year we experienced our first loss of a friend with Cystic Fibrosis. His name was Malachy and anytime you'd like I would love to share more about how his courageous battle with CF impacted my life in a powerful way. The truth is, Kalydeco isn't enough. There are 30,000 people in the United States with CF and only about 2,000 of them are able to take Kalydeco. That means there are 28,000 people out there facing all of the struggles of CF -- countless hours of daily treatments & pills, lung infections, digestive problems, lung transplants (if they are lucky enough to receive the miracle of a donor organ, #donatelife)... The improvements over the past 30 years are remarkable but it is not enough. This disease continues to take the lives of amazing individuals like Malachy and we are determined to do our part to CURE CF. That's what Malachy would want and I guarantee you that's what the families of all 30,000 people in our country with CF would want as well.
This year, I encourage you to get involved and to bring a friend to a walk near you! Spread the word, share Lucy's story and the hope it provides to everyone! She is living a life full of joy and it is because of the CF Foundation that this is possible. We thank you for helping in any way you can! Please consider making a donation and coming to a Great Strides walk near you!
Here are the cities across the country where Team Lucy has been represented, we would love to add more to the list!!
Chicago, IL - (Lisa & Brian Wilson)
Point Pleasant Beach, NJ (Gina Rehrer-Phillip & Diana Smith)
Clifton Park, NJ (Katie Farren)
Washington, DC (Rashmi Sutton)
Ann Arbor, MI (Stacy von Alvensleben)
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Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.