**Thank you to everyone who has already donated to the Cystic Fibrosis Foundation this year through our 2022 Twin Triumph Facebook fundraiser.**
After two years of being virtual, the Great Strides walk is back in-person this year on June 4 in Annapolis! It will be our 10th year participating. Mallory and Camden were only 6 months old during our first walk, and now they are 11, in their last year of elementary school and ready for middle school in the fall.
The last couple of years have been really good for Mallory and Camden health wise. It's the first time since they've been born that we've gone two straight years without a single hospital admission for either one of them. The pandemic helped as they just weren't exposed to a lot of viruses and germs. As a CF family, we were well prepared - constant hand washing and sanitizing has always been part of our daily routine. And Mallory and Camden were no strangers to wearing masks. They had a lot of practice during countless hospital stays and doctor's office visits.
But the biggest news is TRIKAFTA! This is a miracle drug that we have been waiting for a long time. It was finally approved last summer for ages 6-11, and Mallory and Camden took their first dose on July 16. Trikafta is a modulator drug which works to correct the underlying defect in their bodies. People with CF have defects in the CFTR protein where chloride ions cannot move sodium and water in and out of cells as they should causing thick, sticky mucus to build up in the lungs, pancreas and other organs. Trikafta works by helping the CFTR proteins function more effectively.
So far, Trikafta has lead to Mallory and Camden being able to gain weight better, something that has always been a struggle for them and is really important in kids with CF because higher BMIs as a child correlate to higher lung function as an adult. Mallory's weight gain has been so impressive that her pulmonologist said she could take out her g-tube (which was used for overnight supplemental feeds/calories). The tube came out last week and after nine years, Mallory was more than ready to say goodbye. Trikafta has also kept their lung functions up and kept them out of the hospital.
Thanks to your incredible support throughout the years, Trikafta has become a reality for Mallory and Camden and so many others with CF. While it's been very promising so far and gives us a lot of hope for the future, it's still not a cure and won't allow Mallory and Camden to live a life free of CF just yet. 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 still hit them really hard and usually mean a couple of days home and a lot of coughing.
With your support, we know that day will come, the day when Mallory and Camden can say that CF was something they used to have. Walk with Twin Triumph on June 4, donate to our team and help us make CF stand for Cure Found. Thank you all for your support always. It means more to our family than we can say.
*This year's walk will once again be held 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 my kids' favorite day of the year. And Mallory and Camden love to have their friends there!
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should 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 only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by 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.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.