Below are some statistics I recently read that blew my mind, so I wanted to share them with you.
The current life expectancy for someone with CF is 53 (when Mallory & Camden were born it was 29).
Prior to 2019, approximately 250 people with CF received lung transplants every year. In 2022, only 32 needed transplants.
Last year, only 10% of children and 14% of adults received IV antibiotics which is less than half of what was seen in 2019. Mallory was included in the 2019 statistic as she was hospitalized five times that year.
In 2021, there were 675 pregnancies among women with CF which is a huge increase from the previous 20 years. It has traditionally been very difficult for women with CF to carry babies because of the strain it puts on their lungs and bodies.
This is the progress that your donations are funding. It's incredible and inspiring and gives us so much hope for Mallory and Camden and all those with CF to live a long, full life. Many of these milestones have been made possible by Trikfafta, a modulator drug that targets the defective CFTR protein in people with CF enabling their bodies to function more normally.
Mallory and Camden have been taking Trikafta for two years now, and it has been pretty life changing for our entire family. No more hospital stays or IV antibiotics which were a constant in our household for the first 10 years of their lives. They still have to do 40 minute breathing treatments twice a day every day to keep their lungs clear and take 20 pills each day so their bodies can absorb the nutrients from the food they eat. Colds and viruses still hit them really hard and usually mean a couple of days home and a lot of coughing.
Trikafta isn't a cure, but it's getting us closer to one. With your support, we know the day will come when Mallory and Camden can say that CF was something they used to have. Walk with Twin Triumph on Saturday, June 3, donate to our team and help us make CF stand for Cure Found. All donations go directly to the Cystic Fibrosis Foundation to support research and patient programs.
This is our 13th year participating in the CFF's Great Strides walk. Held on Saturday, June 3 at Navy Stadium in Annapolis, it's a very family friendly morning with a short walk around the stadium and lots of free food, drinks and fun. It's always our kids' favorite day of the year, and Mallory and Camden love to have their family and friends there!
WALK DAY DETAILS:
Our picture time this year is at 10:20am BEFORE the walk. Please plan to arrive by 10:00am, so we can make sure everyone is in the team picture. You will enter through Gate #6 off of Taylor Avenue and there will be plenty of free parking. Allow extra time to get to the stadium - traffic is always backed up.
Twin Triumph will have a table and a blue tent set up. We hope to be inside the stadium to the left in the same shady spot we've had in years past. Look for the orange shirts. Don’t forget lawn/beach chairs and plan to stay after the walk for lots of great free food and entertainment.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.