Although we can't be together this year walking on the beach, that doesn't mean we stop fighting! We need to fight harder, and get louder than ever before because WE CAN CURE CYSTIC FIBROSIS!!
Allison and Levi both have this devastating disease, along with 30,000 other Americans who fight day in and day out. In 2015, when Allison was born and diagnosed with CF, her doctor told me that this is an amazing time to be born with CF. In my new mom haze, I thought he was crazy. Is there ever a GOOD time to be diagnosed with a life shortening brutal illness?? Turns out, 5 years later, I can say he was right.
Since 2015, we have seen 3 life saving CF Modulators come to the market. These aren't drugs that treat CF symtoms. These are drugs that treat the disease itself! The latest and greatest drug, Trikafta treats 90% of the CF population. NINETY PERCENT!!! With tears in my eyes, I am so humbled and happy to say that Allison will be able to start this miracle drug this year when she turns 6. Levi will have to wait a little longer but the fact that it is within our reach is mind blowing.
I also write this with great sadness. 90% is an amazing accomplishment and the CF Foundation has made Great Strides since the CF gene discovery in 1989, but this is not a cure. And for 10% of people living with cystic fibrosis, they have no "miracle drug". So we are not done! I can't sit back and say well my kids have their drug, we are done. WE ARE NOT DONE! We don't have a cure!!
This is where you come in. The CF Foundation relies 100% on donations. The drugs that are out there and the drugs that have yet to be discovered are 100% dependent on your donations. We ask you to find it in your hearts to join us in the fight! Become a member of team CF FYTRZ and watch a miracle happen because it will. The CF story is the greatest story in medicine and we will win!
Will you join us?
Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF.
To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our Great Strides team and making a donation, you will be part of a tenacious and passionate group of people committed to ending this disease. Together, let’s make CF stand for Cure Found!
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.