Vincent was diagnosed with Cystic Fibrosis at 2 weeks old. Even though he's not even two, 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, but unfortunately it was cancelled due to the coronavirus. We are instead challenging ourselves to walk virtually and hope to do our part to fill the fundraising gap the CFF has experienced this year. 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."
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to 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 not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, 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. 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 wellbeing of the CF community, those eligible to be vaccinated are required to be fully vaccinated to join us in-person for the event. If you are not fully vaccinated, we invite you to participate virtually if that option exists.
We do not plan to ask for you to provide proof of vaccination. We are, however, counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID and will abide by this requirement.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, and vendors, have been fully vaccinated.