It is hard to believe that this is the thirteenth year we have been in the fight against cystic fibrosis! We feel so fortunate to have you by our side. It is your generosity that has allowed the CF scientific community to make such progress!
In February 2012, a new drug called Kalydeco was approved by the FDA for one genetic mutation. It is the first drug which targets the underlying defect of CF. Simply put, Kalydeco allows sodium chloride to pass through cells, thus reducing the build-up of the thick mucus that promotes lung infection. In late February of this year, eight additional mutations were approved for the drug. Natalie’s was one of these! While we feel very blessed that Natalie’s mutation is included, there are roughly 1900 mutations, so there is still much research to be done. You can follow the progress of ongoing research through the CF Foundation website.
Natalie’s Stand will walk at the Great Strides event in Houston, TX on May 17, 2014. You can participate in several ways. If you would like to walk, you can register online. If would cannot walk, please consider making a donation. You can make a donation by using the link on this page; or if you prefer, you can mail a donation to 426 Peabody Road, Appleton, ME 04862. Checks should be made payable to the Cystic Fibrosis Foundation or CFF.
You can also click on a linked team member below and donate to their page!
Natalie, Amy and I will be there in spirit! We miss you all!
Thank you all for donating your time, talent and finances. And please keep those prayers coming!
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.