Let me start by introducing you to the 2 reasons we walk to fundraise for a cure for Cystic Fibrosis.
1. Sienna Tegan. She has a sparkle in her eye and an awareness of the world that seems far beyond her age. She is this amazing joy who has made us happier than we thought possiible. Since she was little, Sienna has had a passion for life. Everything she does is full of emotion and heart. She loves art, fashion, animals (stuffed or real), make believe, and helping others. She can't decide if she wants to be a marine biologist or a geologist. She dreams big dreams for herself and we do too. She's like every other 6 year old in most ways, except one. Sienna was diagnosed with Cystic Fibrosis at 6 days old. Since that time she has spent 1500 hours doing vest and respiratory treatments. She takes 185 pills a week when she's healthy. At the age of 6, she has been through 2 surgeries and 3 hospitializations. She has a feeding tube that helps her get the extra fat and calories her body can't abosrb on its own. She misses out on special events, holidays and other social gatherings because of the risk of illness. While most kids her age are out playing, Sienna is inside doing her respiratory treatments, having extra meals and snacks and sitting patiently while we tube feed her milk. She dreams of a day when she will no longer need to do her treatmants and take pills. I tell her everyday, that day is coming!
2. Cameron Easton. Our beautiful toddler who never stops moving! His laugh and sense of adventure make us smile everyday and fill us with an unimaginable love. Even as a toddler, he lives his life with so much energy and persistance that I can't imagine anything in life will hold him down. Cameron is always on the go. He is a busy climber and adventure seeker who loves to be social with other kids and the outisde world. When he was just 10 months, he began his vest treatments and sits patiently on our laps for over 200 hours a month through the whole process. He has taken pancreatic enzymes since he was 8 days old. I look at his beautiful face and know that with all the support and research, there is a real possibiity that he will see a cure in his life.
Although we have our 2 reasons for walking, there are other reasons too. There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day just to breathe. We walk for our own kids and for them too. I hope you will support us in our efforts.
Real progress has been for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. By walking today, we are helping add tomorrows to the lives of Cameron, Sienna and all people living with cystic fibrosis. Will you join us? Please consider making a donation to our Great Strides fundraising campaign today!
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.