Vincent was diagnosed with Cystic Fibrosis at 2 weeks old. Even though he's just 3, he's become very familiar with his CF routine. He takes multiple pills every meal to help aid digestion - taking over 200 pills a week. He does several breathing treatments a day to help thin the mucus in his body and fight infections. These take about 2 hours a day. And we manually did chest therapy on him until he was 1. Now he does the shaky vest a few times a day. Every month we visit Lurie Children's Hospital to meet with his team: his pulmonologist, repiratory therapist, dietician, physical therapist, and more. These visits last upwards of 3 hours, but we are lucky to have such a specialized team with dedicated support.
The CF Foundation continues to explore the most promising science to help all of those living with CF. More than 10 therapies have been approved, which have helped add decades to the lives of people with the disease. While we now have life-changing medical treatments for many people with CF, some people with CF do not respond to these medications. In Vincent’s case, he is not yet old enough to access them.
While researchers have made great strides over the years, there is still NO CURE and more research is needed. Beyond a cure, the CF Foundation is doing all it can to help patients and families gain access to the best care, as well as navigate insurance, financial, mental health and legal services.
Our family had chosen to participate in our local Great Strides walk benefitting the Cystic Fibrosis Foundation - please consider supporting us with a donation! Your gift is 100-percent tax deductible, and a lot of companies will also do matching donations.
Thank you for all of your support, love, and donations. Hopefully one day we can make CF stand for "Cure Found."
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.