Welcome to Kaitlin O'Connell's Page
Kaitlin O'Connell
Dear Friends & Family,
I'm thrilled to share that I've been nominated by my amazing nephews, Emmett (17) and Brady (15), to participate in Chicago's Magnificent for the Cystic Fibrosis Foundation. Both Emmett and Brady bravely battle Cystic Fibrosis (CF), a relentless genetic disease that wreaks havoc on the lungs, pancreas, and other organs. It is my mission to help them find a much needed cure! As cousins, Brady and Emmett need to remain 6 feet apart from each other at all times to avoid passing deadly infections that could impact their already compromised lungs. Both Brady and Emmett spend hours a day on treatments and they each take approximately 30 pills/day... all while going to high school, attending extracurricular activities, playing sports and maintaining the typical busy lives of teenagers.
There are around 40,000 people living with CF in the U.S. right now (significantly more than just a few years ago, due to the successful advancements of medicine making it possible for people with CF to live longer). Although 40,000 people is 40,000 too many to suffer with this, the threshold for receiving government funding for research in the U.S. is 200,000 people - making CF an "orphan disease" and restricting any funding for the research needed to develop new ways to help people with the disease find better treatments and a cure. Meaning those 40,000 people in the U.S. are counting solely on fundraising campaigns from groups like the CF Foundation to raise money to pay for continued research.
Chicago's Magnificent:
As part of my nomination, I will be honored by the Cystic Fibrosis Foundation at a special event on November 1st recognizing outstanding professionals in the community. In accepting this distinction, I have committed to raise funds to help the Foundation realize its mission of curing Cystic Fibrosis and providing all people with CF the opportunity to lead long, fulfilling lives.
Brady's Journey with Trikafta:
Brady's life has been significantly impacted by CF, but he's shown incredible resilience. In 2016, he was fortunate enough to enroll in a clinical trial for Trikafta, a groundbreaking medication that targets the root cause of CF. Since its approval in 2019, Trikafta has been a game-changer for Brady, dramatically improving his lung function and reducing the frequency of hospitalizations. It's been a remarkable transformation to witness his improved quality of life.
Emmett's Challenges:
Unfortunately, Emmett's CF journey has been more complex. He carries a "nonsense mutation" that Trikafta is unable to address. This means that while Trikafta has been a miracle for many with CF, it doesn't provide the same benefits for Emmett. It's a heartbreaking reality that highlights the urgent need for more targeted treatments.
The Fight for a Cure:
The CF Foundation has been at the forefront of the fight against CF, funding groundbreaking research and advocating for patients. Their tireless efforts have led to significant advancements in treatments, but we still need a cure.
Where You Come in:
By supporting my fundraising efforts, you have an opportunity to directly contribute to research that could one day provide a life-changing treatment for Emmett and countless others with CF. Your generosity will fuel the development of new therapies and bring us closer to a future where no one is held back by this debilitating disease.
Please join me in this fight by donating today to help find a MUCH needed CURE for two wonderful young men who inspire me everyday - let's kick CF's butt and make it stand for Cure Found!
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