Cystic Fibrosis Awareness Month and Tyler Great Strides Walk are just around the corner. This time of the year gives me an opportunity to express my gratitude for your past support and thank you for the difference you are making in Grace’s life. Trikafta, the drug approved 2 years ago, continues to be miraculous and life changing for most of the CF population. Overall, Grace is much healthier and has lived a more normal life with less mucus and coughing since beginning the drug.
The past two years have been an amazing gift and blessing as Grace has not been hospitalized for an infection. She has stayed healthier and has maintained her improved lung function. However, recently she became very ill for the first time since taking Trikafta. Her lung function dropped 30 points and she was diagnosed with pneumonia. We have recently learned that the terrible bacteria that invaded her lungs in 2017 has reappeared. As Grace finishes her second year at UT Law, we pray it will go away on its own without the need of a lengthy multi-antibiotic treatment. It is so hard on her body and affects her quality of life.
Cystic fibrosis constantly reminds me of the daily blessings in our lives. I am so grateful for you and your support because without you I would not have Grace. It is the research and drugs that keep her alive. Although the most recent drugs are phenomenal, they are not a cure. I continue to fight for my sweet Grace and pray for a cure for this exhausting, progressive disease and new treatments for these deadly, resistant bacteria. I hope you will support me and my family again this year and join Team Saving Grace on April 30th at Bergfeld Park. We need you and your support to make CF stand for cure found!
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.