Our stories are emotional, raw and difficult to tell. There is a reason we support Cystic Fibrosis Foundation and here it is:
Cystic Fibrosis Foundation's Mission:
The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment and ensuring access to high-quality, specialized care.
History of Cystic Fibrosis Foundation:
Established in 1955, prior to this foundation children born with Cystic Fibrosis were not expected to live to elementary school. Without them, Katelyn would only have about 2 years left to live.
Because of their efforts individuals with Cystic Fibrosis are now living into their 30's and beyond. This is amazing and we have come a long way but let's put it into perspective. Katelyn's Mommy and Daddy are in their mid 30's, if they had this disease they would be coming to the end of their life (This is why we fight).
Cystic Fibrosis Foundation was founded by a group of concerned parents that wanted a better life for their kids with Cystic Fibrosis.
The Foundation is directly responsible for the advances that have been made in treatment and care through an innovative business model, called venture philanthropy (encouraging pharmaceutical companies into investing in rare diseases)
They established accredited care center networks (Hospitals that have been trained and have specific clinics for those with Cystic Fibrosis)
They created a patient data registry that follows the 30,000 individuals with CF so that we can learn more and continue find a cure.
The foundation supported the scientists that discovered the CF gene which opened the door to understanding the disease at its most basic level
They continue to research medications like, Pulmozyme, Hypertonic Saline and TOBI that have become life increasing medications for those with Cystic Fibrosis.
They make progress but it is never enough because there is always more that can be done and because a cure has not been found.
This foundation has personally helped Katelyn get life saving medications (Kalydeco) so that she may live a little a longer, but there are thousands of children who cannot take this medication because of the mutation they have. We need a cure for EVERYONE with Cystic Fibrosis and we believe that this foundation's mission will lead us there.
Please, please, please become a member of our team by walking with us and/or making a donation. You will be joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families. Come walk with us.
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.