Marc turned 9 this March and Thank God, he's doing great!!!
Marc is healthy and active!!! He participates in track and field, swimming, soccer, basketball, ice skating and bowling.
He's in a musical theater class and takes piano lessons! He loves movies, and likes to write and direct his own short films! He wants to be an director and plans to make the My Weird School series book into a movie. He's already cast all the characters with his favorite actors! Watch out Hollywood!
He's in 3rd grade now, working hard on his academics! We're so proud of him and we know he can do anything he sets out to do!
Marc spends between 2-3 hours doing his daily treatments. He goes to the CF clinic quarterly for routine examinations, and almost every time he gets sick. Aside from COVID, he must be very careful in public to keep away from bacteria and viruses that can make him extremely sick. He takes pancreatic enzymes with every meal and snack to digest his food, but he often get stomach pains regardless.
Most people know Cystic Fibrosis as a "lung disease" because the thick mucus always adversely affects the lungs. But it also affects the stomach, gastrointestinal tract, sinuses, pancreas and liver. The constant exposure to medication can also damage the kidneys. It can causes CF related diabetes and male infertility. Not to mention the mental health issues of depression and anxiety. CF is a progressive, chronic illness with no CURE!
Marc looks great, he's healthy, but it takes a lot of daily maintenance, medication and patience to go about his life as a typical 9 year old boy!
Marc's been on Trikafta for a year now. Trikafta helps in correcting the mutated genes for CF patients with two copies of the F508del mutation. It helps to improve lung function and reduce respiratory exacerbations,but it is NOT a cure! It doesn't eliminate his daily routines of treatments and medications. Despite Trikafta's promise, the average life expectancy of a CF patient is 40.
We still need a cure for Marc and we'll walk every year until they find one!!!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to BREATHE.
We walk for them. Will you help us?
All we need you to do to is either make a donation (any amount is appreciated) or become a member of our team by clicking on the "Join our Team" button. From there you can make a donation and start your fundraising.
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.