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 ffamilies.
Here is part of Ellie' s story.
Ellie had surgery at less than 24 hours old. She spent 16 days in the NICU at riverbend hospital in Eugene and we stayed in a hotel down the street visiting her all day, cuddling and soaking her up. Her surgery was for what we thought was a blockage in her intestines but when the surgeon got in there she discovered no blockage and Ellies poop in her intestines was like dried out playdough. So she had to clean Ellie out and did tests to make sure her nerves in her colon were alive. If they weren't she would have been diagnosed with Herschprungs disease which is when some or all nerve in the colon are dead which could have led to more intensive surgery. But they came back alive which left us with the 2 possibilities, cystic fibrosis or just a 1 in a million chance it just happened and all would be normal after. Most states do testing for Cystic Fibrosis in the newborn screening and that confirmed it for us. About a year later they did a sweat test which also came back positive for Cystic Fibrosis. A sweat test is a small item they put on you that soaks up your sweat and tests the salt in it. People with cf have more salt in their sweat which can show on a hot summer day after they get sweaty you may notice salt crystals on their skin. Also you can taste more salt if you lick a person with c.f. which is how they used to know to test for it a long time ago.
We thank you so much for all the support and are THRILLED to announce your efforts have helped us get FDA approval on a triple medication that will help 90% of the CF Community including Ellie!!! That being said there are 10% of the CF Community without this life saving treatment and we still need your help!!! Help us support until CF stands for Cure Found!!!
Our Team Jamie Michels $0 Christopher Michels $0 Ellie Michels $0 John Swanson $0 Nola Swanson $0 Achievements:
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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.
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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.