Why am I so passionate about raising funds and awareness for Cystic Fibrosis?
Simply put - It's important to me because of my daughter, Olivia.
Olivia was diagnosed with Cystic Fibrosis at 3 weeks old. We work hard to maintain her health - from hours of inhaled/respiratory therapies each day to handfuls of pills with every meal. We can never stop. Because if we did, CF would catch up.
In case you may be unfamiliar with Cystic Fibrosis, it is a life-threatening, genetic disease that affects the lungs and digestive system of more than 30,000 Americans. It causes mucus to build up and clog some of the organs in the body, particularly in the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. It also causes bacteria to get stuck in the airways, causing inflammation and infections, leading to lung damage. Mucus can also block the digestive tract and pancreas, stopping digestive enzymes, needed to break down food, from getting to the intestines.
Olivia's ability to thrive with this disease is very largely due in part to the tremendous work of the Cystic Fibrosis Foundation. The funds raised by this organization fuel the vital research towards drugs that help to improve the quality of her life. Nearly every CF drug available today was made possible because of Foundation support.
When Olivia was diagnosed, we were told the current life-expectancy of someone with CF was 37 years old. I'm not going to sugarcoat it - this shakes me to my core -- no one wants to hear the words "life-expectancy" in association with their 3 week old (or 8 years old) child. In just the 8 years since her birth, the median life expectancy for someone with Cystic Fibrosis has been raised to 47 years. This is why raising funds and awareness for CF is my passion. I will not stop until a cure is found for this disease. What would you do if it was your child? Your spouse? Your friend?
Recently, Vertex has come out with a medicine called TriKafta which can be used with the most common mutation of CF. Olivia has one copy of this mutation; however, it is only released for ages 12 and older. We hope approval for the younger ages will be available sometime during 2020.
I am asking you, as my family, friends and even new acquaintances, to consider supporting our fundraising efforts. This isn't just another foundation with another campaign. It's her life. Our lives. It hits home to us.
To get a glimpse of our story, please take a moment to watch our 2015 awareness video at: https://www.youtube.com/watch?v=dwtfCZ10REA
A million & one thanks in advance for your support. It means more than you'll ever know.
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.