Piper was first diagnosed a few weeks after birth. We finally had answers to so many questions that had been on our minds. 'Why isn't she gaining any weight?" "Why does she always poo after we feed her?" Those anxious few weeks of wondering what was wrong were answered after her Sweat Test. She had cystic fibrosis, a disease that up until then, my husband and myself had heard little to nothing about. We learned quickly how to take care of little girl with her new regiment of therapies and medicines. Fast forward to today - Piper has been a relatively healthy 7 year old. She has increased her inhaled medications along with her Vest. This year, Piper has had the opportunity to participate in the Tezacaftor study for the 6-12 age group. We have been traveling to Charleston, SC (MUSC) working with Dr. Flume and his researcher Abbi Reed. While some of these visits are harder than others (many labs and long days), Piper usually keeps a positive attitude. Piper has started first grade this year and is loving it! We hope for her continued health as the school year continues.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them. Will you join us? All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising.
By becoming a member of our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.