Joseph' s day begins differently from most 16 year-olds. He starts his day with three drug treatments administered through a nebulizer and one treatment through an inhaler. The first nebulizer treatment is Albuterol to open up his lungs, the second is Hypertonic Saline to loosen the mucus that accumulates in his lung and the third is Pulmozyme which helps breakdown the mucus. This mucus causes the chronic, life-threatening lung infections associated with Cystic Fibrosis. As we are administrating the nebulizer treatment, Joseph receives chest percussion therapy given to him through a vest that fills with air and pounds on his chest. The chest percussion helps clear the mucus broken down by the Pulmozyme. He then inhales a steroid to assist with his breathing. Over 3 years ago Joe developed an infection called pseudomonas aeruginosa (or pneumonia) so in addition to his normal regiment of medication and therapy Joe inhales either a drug called Tobramycin or Cayston depending on his doctor's recommendation 2 to 3 times a day rotating every other month. This entire treatment session take approximately 45 minutes. If these treatments are not successful he would need to be hospitalized to have PICC line inserted into his arm and antibiotics would be administered to him intravenously for almost a month.
Joseph’ s daily eating routine is the same as most children his age with the exception of adding Pancreatic Enzymes to ALL of his meals. Cystic Fibrosis affects Joseph's digestive system by preventing the breakdown of food for proper absorption of nutrients. The Pancreatic Enzymes assists with the break down allowing him to develop at a normal rate. Joseph takes approximately 20 Pancreatic Enzymes pills a day.
A new medication called Trikafta was released 2 years ago to help with the fight to improve the lives of those with Cystic Fibrosis. Although not a cure we are happy to report that Joseph started this medication and his pulmonary function tests have increased beyond our expectations. This would not have been accomplished without your donations. The medication has not only helped Joseph, but has also helped thousands of patients breathe easier. Especially during this time of COVID-19, Joseph having an increase in pulmonary function makes it easier for him to fight off viruses and other illnesses.
Please help us continue the fight and ultimatley find a cure for Cystic Fibrosis.
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.