I walk for my daughter Alexa! Alexa is now almost 15 living with CF. She is a fighter! She required a G-tube to help provide extra nutrients and help maintain her weight since she was just a year old. She has had yearly hospital admissions lasting up to 14 days, beginning signs of liver disease, and several sinus surgeries to date. In June of 2018, Alexa was officially diagnosed with CFRD- CF related diabetes. This was extremely tough, but like everything else she adjusted and is doing great! A typical day in the life of Alexa consists of taking over 20 inhaled and oral medications, a vest treatment with nebulizers which helps loosen up the mucus in her lungs, enzymes before any snack, meal or drink to help her absorb the nutrients and daily insulin. SHE NEEDS A CURE!
MAJOR UPDATES:
On November 4, 2016 Alexa took her first dose of Orkambi-the first ever drug designed for her specific gene mutation that treats the underlying cause of CF (compared to all the other medications that only treat the SYMPTOMS of CF). This is HUGE! This gives us HOPE.
In June 2021, an even BETTER medication was developed called Trikafta and she was able to take her first dose on her 12th birthday. Trikafta has been LIFE CHANGING. She has needed less antibiotics and has had zero admissions since starting Trikafta! Overall, she is just so much healthier!
***One of the biggest updates this year for 2024: After 14 years, she was able to remove her G-TUBE!! She is sooo excited and has worked extremely hard to make it happen. While this will bring new challenges, she is ready to conquer! We are so grateful for the medical advancements that have given us so much hope for the future.
All of these life changing medications have only been possible by the donations from people like you, that support our fight for a CURE. This is why we are so passionate about fundraising-we will not stop until we have a cure! To all of you that share our story, help raise funds, join us for the walk or our events- THANK YOU! Your continuous support means more to us than you will ever know.
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Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.
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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.