Dear Family and Friends, This year the 2021 CF Great Strides walk is virtual on May 15th. We need your help to meet our fundraising goal. Your generous gift will be used to help support the Foundation’s mission of finding a cure and improving the lives of those with CF. And, your gift is 100 percent tax deductible. You are helping Ben and all the other people, who graciously fight this disease daily. Ben spends a few hours everyday doing breathing treatments and taking many medications to help him live a healthy life. Ben does all this in hopes that he will grow old and enjoy all that life has to offer. Even though the walk is virtual this year we are still fundraising to help make CF stand for Cure Found! Ben turned 13 on March 10th. I can't believe we have a TEENAGER! Every year we celebrate his birthday I can't help but think back to his birth. It was a long five months in the hospital, as he fought for life in the NICU. We know his progress is due in part to your generous donations. The average life expectancy continues to rise because of your donations. The Cystic Fibrosis Foundation is constantly making great advances, to prolong the lives of those battling this disease. It gives us hope for Ben's future. Ben is in 7th grade at Royal Oak Middle School. Ben has transitioned well to virtual school. He has had to be resilient throughout his life and this transition during Covid has come with ease. He's truly an adaptable child who takes life in stride. Ben started the miraculous new CF modulator, Trikafta, a year ago, March 4th. After one year on Trikafta Ben's lung function has significantly improved. He was in the hospital for an exacerbation last Feb/March right before Covid hit. Ben has been able to stay healthy and avoid any hospital admissions since then. Your donations have helped get this drug on the market to give those fighting CF a chance at living a healthy, long life. Cystic fibrosis is a devastating genetic disease that affects approximately 30,000 children and young adults in the United States. Research and care supported by the Cystic Fibrosis Foundation are making a huge difference in the lives of those with CF. Making a donation is easy and secure. Just click the link below that says, "Click here to visit my personal page" to make a donation that will support my team. Any amount you can donate is greatly appreciated. Your support will help fuel lifesaving CF programs. Thank you for supporting Great Strides! Together, we can make a difference and “add tomorrows” to the lives of those with CF.
Kati, Chris, and Ben
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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.