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)
Connect With Us
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.