Hello Friends and Family,
The Great Strides Walk for 2023 is May 7th at New Canaan High School starting at 9 AM. Please join us for the walk or contribute to the Cystic Fibrosis Foundation to help enable their continued progress in research and drug development.
Did you know that when Madeline was diagnosed in 1990 at 3 months of age with Cystic Fibrosis, the median age of a patient was around 28-30 years? Madeline is now 33 years old. She has certainly had many health struggles over the years, yet due to the development of multiple drugs, most specifically Trikafta, Maddie has maintained a more stable well being and vitality. With all the potential drugs in the CF pipeline along with those newly developed, the median age of patient born between 2017 and 2023 is now 54 years. More than 60% of CF patient are now over 18 years old. This is a huge success story!
Maddie has great fortune in that she has the most common genetic marker for CF: F508delta. Thousands of other CF patients have multiple other genetic markers not responsive to the drugs presently being used. Despite all the drugs and advances, it's not unlikely that Maddie will end up with a CF exacerbation at least once a year; meaning IV antibiotics and increased respiratory treatments.
The CF Foundation is committed to developing treatments and/or a cure for all CF patients. We stand behind their dedication as improvements in every CF patient's health is the goal.
You can send a check to the CF Foundation to me at: 68 Cove Ave, Norwalk, CT 06855 or donate through this website. Thank you for all your past support - we truly appreciate your generosity.
Love, Anne
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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.