Dear Friends and Family,
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!
Sincerely,
Lori
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.