While I'm not a fan of fundraisers this foundation seems to really use the money they receive in making a better life for people who have cystic fibrosis. In just the time that Gwen has been here there have been amazing treatments that have come out really changing the lives for people who have cf. If you are able to donate I want to thank you so much. I also think this is a great way spread awareness for cystic fibrosis and Gwen’s life.
We found out our daughter has cystic fibrosis through the new born screen test 10 days after she was born. I had never been more devastated or confused in my life. Within a month of her being born she had her first couple trips to the cf clinic and was taking enzymes with every meal and started chest therapy twice a day with inhaled medication. She goes to the cf clinic about every 5 weeks and to this day you never really know what to expect but i try to ask as many questions as possible. This is all a daily part of her life with about 20 enzyme pills a day, two sessions of 30 minutes each of vest therapy that loosens up the mucus in her lungs to help her clear it, 2 types of inhaled medication, vitamins and supplements. All while trying to get her to eat as much as possible because having cf you need about twice the calorie amount someone else would need. Trying to keep things clean because with the thick sticky mucus in your lungs you can catch things more easy and a common cold can turn into something more major for her. She has been sick once- which for precaution turned into an 11 day hospital stay of IV antibiotics. Looking at her you would never know; she is a normal heathy toddler that happens to have cystic fibrosis. By the time she is of age (around 6 years old) she should be approved to start taking some of the medication that is shown to be life changing for people with cf. I had no idea that I was going to be the mom of such a super hero.
Join our team and help us get one step closer to a cure for cystic fibrosis!
For too long, cystic fibrosis, a rare, genetic disease, has robbed people of tomorrows – progressively limiting their ability to breathe and tragically shortening life. There are approximately 30,000 Americans living with CF. 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!
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.