This past year has of course had its challenges, but the silver lining for our family has been Reid’s health. I’m happy to report that when Reid quarantines in our house, sees no one and does nothing he stays super healthy! In the absence of germs, Reid hasn’t had a single respiratory exacerbation, required any antibiotics (except his maintenance ones), or suffered any CF-related setbacks. I don’t think he’s even sneezed in a year! He did manage to visit the hospital twice - once for an appendectomy and once for a broken finger, but hey, we’ll take it. Of course, the isolation has been tough and this is not how any of us are meant to live, but I’ll take this year of good health and hug it and say thank you.
In October 2019 the FDA approved Trikafta for CF patients 12 and older. On July 14th, 2021 Reid will turn 12 and take his first dose! Trikafta is a modulator therapy that is designed to correct the malfunctioning protein made by Reid’s CFTR gene. It’s not a cure but it’s the closest thing we’ve ever had and we couldn’t be more excited!! This is science at work, this is your donations at work.
We’re not done yet and we still need your help. There is amazing scientific research still ongoing to correct the underlying cause of CF, a malfunctioning gene. We also still need to find a modulator therapy for those whose mutations aren’t addressed by the existing modulators. We are lucky in that Reid has one copy of the most common mutation, basically he has the common form of a rare disease. If he had two rare mutations we would be left still waiting for our turn. I have to keep going to help those patients and those families and make sure they get the same bit of relief that we’re getting.
I know there’s a lot going on in the world right now, but we still need your help. We still have a boy who needs a cure. As always, thank you from the bottom of our hearts.
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.