If you are new here, thanks for checking us out. If not, welcome back to our 7th year of fundraising!
Payton has kept us on our toes this past year! She is loving 2nd grade and has even done well with jumping back and forth with in class schedules and going virtual.
Unfortunately Payton broke her leg last summer while we were on vacation in Montana. It's been a long road of recovery. She is finishing up physical therapy and was cleared to start dance class. The moment she was cleared was the moment I hit the submit order button for tap dancing!
Payton does her vest twice a day for 24 minutes along with a nebulizer treatment as her normal routine. She has improved her numbers with her PFTs (pulmonary function tests) and is gaining weight and growing appropriately. Her last PFT was 115%! Our goal is always to be above 80%, but of course I told her we would not accept anything lower than a 90%!
Because of all of you and your love and support, research has been able to make leaps and bounds towards a cure. There is a medication that is a “triple therapy” currently awaiting FDA approval for age groups of 6-11. The trial for ages 12 and over went so well that they were able to trial the younger ages. This is super exciting because this triple therapy would help Payton with her mutations and the adverse side effects that they cause. Our pulmonologist is hoping we can start the treatment in the next several months. There was a delay due to effects of the pandemic that has put the approval on hold. When we first found out that Payton had Cystic Fibrosis she was 3 weeks old and the average life span at that time was 35. Now we’re talking about a possible cure in just 7 years!
I know there are more fundraising efforts out there and it can seem overwhelming at times, especially now with everything we all have endured the past year. We just ask that you please take the time to read our story, keep Payton in your prayers, and if you by any chance have an extra $5 to donate we would love that as well. Thank you in advance for all of you and all the kindness you have shown Payton and our family. We wouldn’t be able to do this year after year if it weren’t for you all.
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.