It is that time of year again. Actually, it has been a while since we went walking so let me play a quick highlight reel of the last 5 years. Yes, we have not walked in five years, but there are several good reasons for our absense from GREAT STRIDES.
Following 2017 GREAT STRIDES, Ashley Anne (AA) took a turn for the worse. She had to start going to Pulmonary Rehab 3 days a week at Lexington Medical Center under the guidance of her CF Clinic. However, she could not improve despite her hard work. Her lungs continued to fail and she hit a record low 34% of expected lung volume on the pulmonary function test (PFT).
She was admitted to MUSC in Charleston in August 2017. We were hoping to have her tuned up and released by my birthday September 9. She had MANY battles during that hospital stay, and spent a lot of time in ICU. She battled, we prayed, and she won. She was released from the hospital September 24th, in time for HER birthday.
She had a few smaller episodes, and her PFTs would continue to rock between really bad and scary bad for the next two years. Then in November of 2019, she was able to try Trikafta, a new Cystic Fibrosis medication that works on the cause of the symptoms of CF by making the sodium chloride transfer in the cells of her body work correctly. Within days her cough, which had been endless and loud for YEARS went away. Her lung function improved to 85% of expected. We were living a miracle.
She moved out of the house and began her young adult life in December of 2019. We all know what happened in February of 2020. She had to return home where I could lock down and help her stay safe.
And here we are two years later. As the world opens wide, we are still on pause waiting. Ashley Anne had an allergic reaction to Trikafta in July of 2020, so she was taken off the medication. Her lung function has begun to slide back to the scary numbers. Her lung cultures now show a lot of bad bacterial growth. And we are braced for the WHAT NEXT.
So . . . I’m participating in Great Strides and want you to join me! For more than 30 years, Great Strides – the Cystic Fibrosis Foundation’s largest national fundraising event – has helped fuel the Foundation’s mission to cure cystic fibrosis and raise awareness for this rare, genetic, life-shortening disease that makes it difficult to breathe.
Join our team and help us get one step closer to a cure for cystic fibrosis – a rare, genetic, life-shortening disease that makes it difficult to breathe.
With supporters like you by our side, the Cystic Fibrosis Foundation continues to lead the way in the fight against CF, fueling extraordinary medical and scientific progress. The life expectancy of someone born with CF has doubled in the last 30 years. Despite this progress, many people with CF do not benefit from existing therapies either because their disease is too advanced or because their specific genetic mutations will not respond. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease.
We walk in Great Strides for them.
Will you join us?
Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF.
To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our Great Strides team and making a donation, you will be part of a tenacious and passionate group of people committed to ending this disease. Together, let’s make CF stand for Cure Found!
IF YOU CANNOT JOIN US - PLEASE CONSIDER A DONATION The link to my donation page is below
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.