When Oliver was just a couple of weeks old, we received a phone call that his newborn screening test came back abnormal. After multiple sweat tests and blood tests, we discovered Oliver has two CF traits. He was originally diagnosed with CFTR - Related Metabolic Syndrome (CRMS). Unfortunately, in 2019 Oliver's sweat tests results went up significantly and his diagnosis was changed to CF.
Oliver continues to do PT daily in order to avoid mucus build up. Now that he is 6 he will be starting Trikafta in the next couple of weeks as preventative measure. Oliver's team is super excited for him to start this since it is 3x as effective as his prevoius medication. Please support us!
Your money goes to funding research that allows medications to be used on different traits (like Oliver's!) We are incredibly grateful for our insurance that makes this $300,000 a year medication affordable, but that is not the case for everyone. Your money also helps other families who cannot afford these life saving medications obtain them. Your gift is 100-percent tax deductible.
Since Oliver turned 6 this year we have a modest goal of $600 and are hoping to increase our goal to match his age every year.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
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 help minimize the risk of COVID-19, 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.)
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.
Please be advised certain localities and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
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 are feeling ill or have been recently exposed to COVID-19.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.