Everything looks a little different this year, but ultimately our fight against CF hasn't stopped, even though we're collectively fighting something else too.
The Great Strides Walk will be a national virtual event this year on June 5 at 4:00. https://community.cff.org/vlc/live/38/page/213?timezone=America%2FChicago#
Our local chapter is having an online pep rally event on May 30 at 11:00 and they will share a video during the event featuring Elliott and Amelie. https://www.facebook.com/events/2473152239452607/
Elliott and Amelie have the honor of being the ambassadors for the Wichita walk this year, and we had many events we were going to participate in, prior to leading the walk. Of course all of those events were canceled and the walk is now virtual. The kids have been disappointed, but we are going to do our best to still raise awareness virtually.
Our team, Four Leaf Clovers, will be walking to honor Elliott (age 7), Jonah (age 7), Amelie (age 5), and Ellery (age 4), 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.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.