Welcome (back) to Cori's Sunshine Superheroes! This is our 9th year participating in the Cystic Fibrosis Great Strides walk and we are super excited for another great event. As with many other things, the walks for the last two years were canceled and we are SO EXCITED to be back in-person for 2022!
Again for this year you can download the Fight CF mobile app to participate and track your miles walked prior to and at the event - a great way to get some steps in for a worthy cause! And of course you can always donate :). However you participate this year (in-person walker, virtual walker, and/or via donation) we cannot say 'thank you' enough to all those that have supported, and continue to support Cori and her team!
Cori is still an atypical case – she does her twice daily vest, takes her Kalydeco two times a day, and has the occasional antibiotic when she’s sick. Overall, she is still a typical kid - just with her CF super powers. :)
Eight years ago we couldn't have imagined all of the promising things that have happened in the CF community and so much of that is a result of the work that the CF Foundation does. Despite the ongoing COVID pandemic the CF Foundation continued to forge ahead in pursuit of a cure. Just in the last year, they’ve:
Received approval of Trikafta for children 6-11 years old with certain mutations (great news for starting treatment early)
Awarded Eloxx up to $2.6M for studies on Nonsense Mutations - especially the G542X mutation that is the most common CF nonsense mutation and one of Cori's. This is also significant research because in addition to CF, there are approximately 1,800 diseases caused by nonsense mutations and most are still in pursuit of treatment/cure.
Awarded Life Edit Therapeutics $400K to explore gene editing technology for CF individuals with nonsense mutations. As well as 1.8M to Carmine Inc., GenexGen Inc. (CRISPR), and Specific Biologics Inc. for genetic therapies research.
Awarded $5M to BiomX for research on the growing challenge of antibiotic resistance
Exceeded Initial $100M Infection Research Initiative Funding over two years ahead of their goal
And many more exciting things in the world of gene editing, antibiotics, and of course research on COVID-19 and the CF community
All of these things are helping to extend the tomorrows for CF patients. However, there is still a lot of work to be done and it's crucial that we continue to support the CF Foundation and all that they do.
My intent with this team is to help raise awareness and funds to find a cure for Cystic Fibrosis - for EVERY child and person with the disease, not just Cori. We always have a fantastic time participating in the Great Strides Walk - won’t you join us? Whether you make a financial donation, participate in the Great Strides walk for Cori’s Sunshine Superheroes, or just support us with your encouragement...THANK YOU! -Julie
What is Cystic Fibrosis?
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
clogs the lungs and leads to life-threatening lung infections; and
obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
The Cystic Fibrosis Foundation
Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters — patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference.
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.