The Great Strides Walk will take place this year on May 6.
Our team, Four Leaf Clovers, will be walking to honor Elliott (age 10), Jonah (age 10), Amelie (age 8), and Ellery (age 7), who all have CF.
We believe that their bright futures will be a direct result of the lifesaving research and innovative medical treatments funded by the Cystic Fibrosis Foundation (CFF). To do our part to support the search for a cure, our family participates in one large fundraising event annually. Once a year, we ask everyone we know to support our family and the 30,000 Americans living with CF by making a donation to the Cystic Fibrosis Foundation. Maintaining hope for a cure and pursuing and supporting this research is the best way we cope with this illness.
As many of you know, CF is a life-threatening disease that adversely affects the lungs, digestive system, reproductive system, and the liver. For those who are interested in more details, I've added some "CF quick facts" below. Research continues to make major breakthroughs in treatments to improve outcomes and the life expectancy continues to be longer. CF is no longer just a pediatric disease because now some people are surviving into adulthood. Great Strides is the largest fundraiser for the Cystic Fibrosis Foundation which supports further research with a mission to find a cure.
We would welcome and appreciate any support you can give; keeping us in your thoughts or prayers, helping us reach our fundraising goal with a donation of any amount, or joining our event or a Great Strides event in your area. Donations support life-saving research and medical progress, and are 100-percent tax deductible. Thank you in advance for your support! This is a wonderful cause that is very close to our hearts and your help makes a difference for those affected by CF.
We, and so many others, need a cure for CF!
Julie, Brett, Elliott, and Amelie McNeil
Ami, Tanner, Jonah and Ellery Ratzlaff
Cystic Fibrosis (CF) Quick Facts
In the 1950s those with CF often didn't survive to get to elementary school. Current median predicted age of survival is late 30s - early 40s. Of course we need this to continue to increase and the research funded by the Cystic Fibrosis Foundation is making this a real possibility.
Cystic fibrosis is a disease that causes mucus to be very thick. This adversely affects many organ systems.
Mucus can clog the lungs making it difficult to breathe. The thick mucus also traps bacteria in the airways, which often leads to severe lung damage. Respiratory problems are the most serious complication for people with CF.
In the pancreas, the buildup of mucus prevents the release of digestive enzymes that help the body break down food and absorb important nutrients. People with CF often have malnutrition and poor growth. They often need to take enzymes and require twice as many calories. Scarring of the pancreas can also lead to diabetes.
In the liver, thick mucus can obstruct bile ducts, which can lead to cirrhosis.
Most males with CF cannot have children and for females reproduction is very difficult.
Both parents must be carriers of the CF gene to have a child with CF. When both parents are carriers, the chances are:
25% that the child will have CF
50% that the child will be a carrier and will not have CF
25% that the child will not inherit either CF gene.
Currently there is no cure for CF. All CF therapies available today just treat the symptoms of CF. There have been new medications developed that target the faulty protein that causes CF. Research toward a cure continues. We remain hopeful.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.