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, firstname.lastname@example.org) 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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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should 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 only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by 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.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.