The CF Foundation is holding its national Great Strides walk. As you know, our 34 year-old son, Bobby faces a daily battle against this deadly disease.
Cystic Fibrosis is a chronic, progressive, genetic disease which affects the pulmonary and gastrointestinal systems. Bobby has experienced disease rogression over the last couple of years but since he started Vertex’s Trikafta his lung function has climbed 14 points from baseline, he has gained 22 pounds, has now cleared the thick mucus in his lungs, has stopped coughingand has more energy, which he will need.
We are so grateful to everybody who has contributed. The 33 years of walkathons has yielded this medical miracle. Although this drug is not a cure it corrects the basic cell defect by creating a more normal condition in CF lung cells and other organs such as the pancreas.What this drug can’t do is reverse the historical lung tissue damage caused by the chronic and intractable infections and cycles of inflammation that are the hallmark of CF. Our work is not done.The CFF has committed $100 million to infection research a bold initiative committed to reducing infections amd pulmonary exacerbations. We need to develop new anti-inflammatory drugs, new anti-invectives to attack these Multi-Drug Resistant(MDR) pathogens that colonize the CF lungs. The Infection Research Initiative will take a broad approach to advance drug development into all CF-related micro organisms including NTM disease in CF patients.
Your continued support during these tough economic times is urgently needed to complete our mission to successfully defeat CF, our nation #1 genetic killer of children and young adults. Please join our team by donating on line. Or you can Mail a check to Maryann O'Mahony, 812 Imperial Drive, Baldwin, NY 11510
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.