Hi family and friends,
Our Great Strides CF walk is next Saturday, June 1. This will be our 14th year walking and this has oddly been the hardest letter to write. Mallory and Camden are thriving, and it's easy to forget some days that they have CF. They still have to do 40 minute breathing treatments twice a day every day to keep their lungs clear and take 20 pills daily so their bodies can absorb nutrients from food. Colds and viruses hit them really hard and usually mean a couple of days home and a lot of coughing. But over the past several years, there haven't been all of the things that were so common in the first 10 years of their life: constant hospitalizations and nights spent away from home, trips to the ER, surgeries to place PICC lines for IV antibiotics, x-rays showing lung damage, constant worry and fear.
All of this has been made possible by Trikafta, a miracle drug funded by your donations. We are so fortunate that Mallory and Camden are able to take Trikafta. For 10% of the CF population, there is no Trikafta - it doesn't work with their specific CF gene mutations. There are many others who can't tolerate Trikafta because of the side effects. For them, CF is still a horrible reality. That's why we continue to fight and fundraise, so that all people living with CF can live long and healthy lives.
There is so much research still being done and a lot of hope on the horizon. Scientists are exploring ways to use gene editing, which would correct mutations in the defective CFTR gene, and gene therapy, which would provide a correct copy of the CFTR gene to cells. Initially, genetic therapies will likely be delivered by inhalation and targeted to the lungs. Eventually, the goal is to develop therapies that can be delivered to the entire body finally leading to a CURE one day.
Walk with Twin Triumph on Saturday, June 1, 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.
The walk is held at Navy Stadium in Annapolis and is 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!
love,
Rachael and Dirk
WALK DAY DETAILS:
Our picture time this year is at 10:30am BEFORE the walk. Please plan to arrive by 10:00am, so we can make sure everyone is in the team picture. 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.
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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.