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.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.