Brett And Julie McNeil

Hello Friends and Family,

The Great Strides Walk will take place this year on May 4.

Our team, the Four Leaf Clovers, will be participating in the Great Strides walk to honor and support our children, Elliott (age 11) and Amelie (age 9), and their cousins Jonah (age 11) and Ellery (age 8), 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). 

We greatly need a cure for cystic fibrosis, so annually we ask for donations to support CFF research. With the research that is being funded by the CFF, there is a real chance that our children will have access to a cure in their lifetime, and we desperately want to make that a reality.

Once a year, we ask you to support 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 gives us so much hope for the future. CF is considered a rare disease and the Foundation doesn't receive any federal funding. Most of the current treatments for CF are a result of research the CFF has funded through individual and corporate donations, and the increase in life expectancy for those with CF is significantly attributed to this. Your support has a definite impact! 

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 and some information about the treatments our children are on. 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 many 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, raising awareness, donating any amount, or joining our team and walking with us. 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.

With love and appreciation,

Julie, Brett, Elliott, and Amelie McNeil

Our Info

Our kids currently take digestive prescription enzyme capsules with all meals and snacks due to malabsorption. They take extra vitamins and follow a high calorie diet as well. They both use inhaled and nebulized breathing treatments twice daily as well as chest therapy with their vests, and are taking Trikafta. We've had some new and some ongoing health concerns this year. I am continually amazed by the resiliency of our children, and I am so proud of them!

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 mid 50s (increased over the past decade compared to late 30s - early 40s). This is an amazing and encouraging change to see! Your support is making a difference! 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. There are some new medications that are modulators of the faulty protein that causes CF and this is another advancement in the preventive treatments that are available. Research continues to work toward a cure. 

cff.org