This is our 22nd year participating in the Great Strides Cystic Fibrosis Walk. And Covid certainly has put a damper on our getting together and our fundraising efforts.
We still want to thank you so much for your support over the past 22 years! You are awesome and the support you have provided over the years has been, well, humbling!
We are saddened we won't get to see all of you 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 on the wait list to get the vaccine.
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 22 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, 9572 Perry Hwy, Pittsburgh PA 15237.
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.