Welcome (back) to Cori's Sunshine Superheroes! This is our 7th year participating in the Cystic Fibrosis Great Strides walk and we are super excited to gear up for another great event. Last year we surpassed the $12,000 mark in terms of fundraising from the past 6 years - WOW! 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. She’s pretty healthy and we are SUPER grateful for that. This last year she made the switch from granule medicine to actual pills - let's just say we're still working on her pill-taking technique. :)
Six 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. Just in the last year, they’ve achieved:
FDA approval of Trikafta for individuals 12 and older. With the approval of Trikafta, the total percentage of CF patients potentially able to receive CF Modulator medications (like Cori) is now 90%!!! This is a HUGE success for the CF community!
Approval of Symdeko for children between 6-11 years old.
Awarding Arcturus Therapeutics Up to $15 million for RNA Therapy to advance a potential therapy that could help all people with CF produce a normal cystic fibrosis transmembrane conductance regulator (CFTR) protein, regardless of their mutation.
Awarding up to $1.61 million to Eloxx Pharmaceuticals Inc. to conduct a U.S.-based Phase 2 clinical trial of an investigational drug that could potentially treat people with cystic fibrosis who have a nonsense mutation. (One of Cori's mutations is a nonsense mutation!)
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.
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.