As most of you know my little sister, Journee, has cystic fibrosis and before she was a year old they told us not to expect her to make it to 1, then 2 and here we are 16 years later with a strong, proving every Dr wrong, beautiful young lady. By the grace of God it has not affected her lungs to any great extent so far, but does affect her in many other ways. She takes 5 breathing treatments a day to prevent lung infections. She has to take Creon every time she eats something so it does not cause severe stomach pain and run straight through her. Her hair is very thin and does not grow much at all, the list goes on and so does her medications. One medicine she began taking a little over a year ago has changed her life considerably. Her hair has started to thicken and grow, and for a self conscious teen girl this is huge. She has now begun maintaining and gaining weight to the point they have pulled her back on her supplemental milks with hopes of eliminating them all together. This new medicine is supposed to repair her damaged dna (the cf gene) continually and maintain her current health. After watching her I have to say it is doing better than expected and the drs are absolutely amazed at her progress. With out special funding these medications would not be available to her and are currently extremely expensive. Her medications are in the thousands and this new one is even higher. (Thank God she has insurance!). Ok so here goes, I tell you all this because we are going to participate in the Great Strides walk on her behalf this year to raise money for continued trials on medications to hopefully one day fully repair the CF gene(her Dr is very optimistic this can and may happen in my sisters lifetime, which due to medicine has now been extended into possibly her 60s). I will be posting details soon. If you find it in your heart I ask that you please pray for her continued good health and then if you can make a donation on her behalf and join us in this walk. She would love to see you there to support her and if you do not know her she would love to meet you.
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? To become a member of our team, just click on the "Join our Team" button. From there you can make a donation and start your fundraising.
By becoming a member 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.
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.