At the beginning of quarantine 2020, I was fortunate to join the team at the Indiana Chapter of the Cystic Fibrosis Foundation. Their eagle-eye focus on mission, venture philanthropy model, and transparency of top leadership is what attracted me to the team. Here in Indiana, a small but mighty team of 4 of us raise hundreds of thousands of dollars and hope for our local CF community.
I am committing to joining our Great Strides community in fundraising to get closer to a cure this year, will you join my team?
CF is an orphan genetic disease (aka rare) that causes the body to overproduce a thick sticky mucus which clogs airways and causes ultimately respiratory failure. CF causes many other complications such as digestive, reproductive, and pancreatic issues. There are over 1700 genetic mutations but 90% have DF508. We have around 750 CF fighters in the state of Indiana alone, 30,000 fighters in the US, and 70,000 worldwide. Around 50% of fighters are over the age of 18 which was a stat unheard of just a few decades ago.
• 1 in 30 chance you are a carrier
• Around 1000 new fighters every year
• Median predicted survival rate now is in the 40s, in 1985 this age was only 25
The Cystic Fibrosis Foundation exists to improve the quality of life for all those with CF, and we will not stop until its done. Real progress has been made, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do. We will not leave anyone behind.
Please support me & Team Waddlebutts!
We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line.
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.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and wellbeing of the CF community, those eligible to be vaccinated are required to be fully vaccinated to join us in-person for the event. If you are not fully vaccinated, we invite you to participate virtually if that option exists.
We do not plan to ask for you to provide proof of vaccination. We are, however, counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID and will abide by this requirement.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, and vendors, have been fully vaccinated.