What a dfference sixteen years makes! When Grace was born in 2002, the predicted median survival age for individuals born with Cystic Fibrosis (CF) was 32.7 years. Today, the survival age is mid-to late 40's. While there is still much work to be done, we are winning the battle against this disease. In the United States, more than 30,000 people are living with CF and over half of them are adults. This progress would not have been possible without the support of friends and family like you.
The advancements in treatments for the disease have directly impacted Grace's life. Until recently, Grace's lung function was persistently low (often in the low 60% range) and she struggled to maintain her health and energy. Within the past year, she began taking Symdeko which targets the underlying cause of CF at the cellular level and allows more chloride ions to pass into and out of the cells—helping keep a balance of salt and water in certain organs such as the lungs. We are happy to say that this drug has made a real difference for Grace. In fact, at her most recent CF Care Center visit, her lung function was tested at 100%!!! These results are incredible and provide us great hope for Grace's future.
Grace will be walking in her 17th CF Foundation GreatStrides event on Saturday, May 18th at Centennial Park in Tulsa. Please join Grace in her fight against CF by sponsoring her at this year's walk.
Thank you for all that you've done and continue to do for individuals with Cystic Fibrosis!
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.