Great Strides is the Cystic Fibrosis Foundation’s largest fundraising event. Walk day is a free, fun, family-oriented celebration that includes a healthy three-mile walk, music, and food. Top fundraisers earn complimentary ride bracelets!
May 2, 2020, marks the tenth year Sarah's Striders will participate in the CF Foundation's Great Strides walk at Oaks Amusement Park!
Please join our team, Sarah's Striders, and help us blow away CF. We hope to see you Saturday, May 2, at Oaks Amusement Park.
If you would like to help Sarah's Striders reach our fundraising goal, simply click the "Donate" button on this page to make a donation that will support our team. Any amount you can donate is greatly appreciated!
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
~ Clogs the lungs and leads to life-threatening lung infections, inflammation, lung damage, respiratory failure, and other complications.
~ Obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food, leading to malnutrition, poor weight gain and increased chance of developing CF-related diabetes. In the liver, the thick mucus can block the bile duct, causing liver disease.
~ Can cause infertility, particularly in men. At least 97% of men with CF are infertile but are not sterile; they can have children with assisted reproductive techniques. Some women also have fertility difficulties because of thickened cervical mucus or malnutrition.
In the 1950s, few children with CF lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can expect to live into their 30s, 40s, and beyond and are leading healthier lives that include careers, marriage, and families of their own.
~ About 1,000 cases of CF are diagnosed each year.
~ There are more than 1,700 known mutations of the CF gene.
~ More than 70% of patients are diagnosed by age 2.
~ More than 50% of the CF patient population is age 18 or older.
~ The predicted median age of survival in the U.S. is 47.
There is no way to accurately predict how long a person with CF will live, as many factors affect a person’s health. Severity of disease and time of diagnosis are two such factors. Many people have a mild case of CF, while others can have moderate or severe cases.
In addition, some adults with CF have only recently begun to use new treatments, while an infant diagnosed at birth will have the advantage of starting specialized treatments that were not available even a decade ago.
“Aging” of the CF community is largely because of the increase in innovative treatments and specialized medical care. Although CF researchers are blazing trails in drug development and gene therapy, experts have no way of saying for sure when a cure will be available.
What Is a Typical Day for Someone With CF?
Because the severity of CF differs widely from person to person, and CF lung infections flare up from time to time, there is no “typical” day. However, because CF affects the lungs of most patients, a large part of the treatment routine is to clear mucus from the airways by using different airway-clearance techniques. These techniques use vibrations to loosen mucus in the lungs so it can be coughed out.
There are several medicines that treat lung infections and help people with CF breathe better.
~ Inhaled medicines to open the airways or thin the mucus. These are liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer and include antibiotics to fight lung infections and therapies to help keep the airways clear.
~ Bronchodilators: Medicines that open the airways for easier breathing.
~ CFTR modulators to target the underlying defect in the CFTR protein. Because different mutations cause different defects in the protein, the medications that have been developed so far are effective only in people with specific mutations. People with CF also take pancreatic enzyme supplement capsules to improve the absorption of vital nutrients. These supplements are taken with every meal and most snacks. People with CF also usually take multivitamins.
How Can I Help?
You can help by making a contribution. Every donation, large or small, makes a difference.
Making a donation is easy and secure. Click the "Donate" button at http://fightcf.cff.org/goto/SarahsStriders to make a donation that will support my team.
Your generous gift will be used efficiently and effectively: Approximately 90 cents of every dollar of foundation revenue goes to support vital CF care.
Once again, thank you for supporting the mission of the CF Foundation, and Sarah's Striders!
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.