Welcome to our annual Great Strides letter and update on the O'Leary family's goal of finding a cure for cystic fibrosis. To say we are living in a strange time is an understatement. Everything seems to have changed. But at least one factor in our lives remains the same. Casey has cystic fibrosis, and that will not change until a CURE IS FOUND!
There has been incredible progress in the science to cure CF. Currently 90% of CF patients have access to a drug that significantly improves their condition. These patients still have CF, but by taking these oral meds their symptoms decrease dramatically and as a result they are living longer lives. This is fantastic news. However, due to the specifics of Casey's genetic makeup, Casey is in the 10% of patients who are not eligible to take these life changing drugs. Fortunately, the Cystic Fibrosis Foundation in now focusing on how to reach that 10%.
The big goal however, remains to find a cure for ALL cystic fibrosis patients. We are close, but we are not there yet. And we will not stop until CF stands for CURE FOUND!
Once again we are asking you to help fund this life saving research. CF is an orphan disease which means that almost all of the money needed for research comes from private donations. Our family has poured our energy into asking for financial help and raising awareness. We are walking in Great Strides twice this year - May 4 and June 4.
Thank you for your support in the past. We hope that you can help us again this year and until we are able to say CF STANDS FOR CURE FOUND. We will not stop "until it's done"!
Please click the links at left to donate and sign up to walk if you wish. If you would prefer to send a check, please make it out to Cystic Fibrosis Foudation and send to us at 5805 Searl Terrace, Bethesda, MD 20816.
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.