This is our 23rd year participating in the Great Strides Cystic Fibrosis Walk.
We want to thank you so much for your support over the past 23 years! You are awesome and the support you have provided over the years has been, well, humbling!
We are thrilled the walk will be IN PERSON this year. It really has become an event we look forward too!
UPDATE ON KATIE:
Katie has had a pretty 'healthy' year. It's super scary with covid out there but she is doing well managing her CF.
For those of you who may not know Katie or that she has cystic fibrosis, let me give you a little background. Katie was diagnosed at 4 months old. She has had her ups and downs and has grown up wearing a mask to every doctors visit – much like we are having to do right now. Yes, it makes it hard to breath. That is what Katie feels like on most days. She and other CF kids describe it like 'it feels like you are breathing through a straw.'
CF causes Katie's body to make thick, sticky mucus, which makes it hard to breathe and it clogs her digestive system. Katie lives with many 'extras'.
But with the generous donations you have all made in the past, the CF Foundation has made remarkable strides with new medicines to help. Katie has been lucky enough to be a benefactor of two of these medicines. Kalydeco, which helped only 4% of the CF population. And now, Trikafta, which helps about 80% of the population.
Trikafta is a new triple combined medication Katie has been on. It has improved her lung function. But she has some weird things too and can’t be on this medication 24/7 because of some of her other problems.
We know this is not the ultimate cure. But we pray this medicine will hopefully buy her healthier lungs until we find a cure.
Currently, there is no cure for CF, but with your help, one could be possible in the near future. The drug pipeline for CF is full of hope, but the CF Foundation has to sponsor many of their own drug trials due to the number of people with CF. Many large drug makers opt to work on drugs that have a larger population. Nearly 1,000 children are diagnosed with CF each year.
We need your help and no donation is too small.
Our first 23 years with Katie have taught us many new things but also shows us what a great future Katie has ahead of her. I only hope that you will help in making her future the best that it can be!
Thank you so much! Becky, Suzanne, Katie, Grandma Nancy and Pappy
To donate with a check: Please make your checks payable to the CF Foundation, and mail to Becky Auer, 924 Center Oak Drive, Pittsburgh PA 15237.
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.