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!
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should 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 only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by 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.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, 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 well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.