When Maya was born, the average life expectancy of a person with CF was 27 years. Breakthrough treatments have added years to the lives of people with cystic fibrosis. Today, the median survival age has increased to 47, but that is hardly enough!
In November of 2019, Maya started on the new triple drug combo called Trikafta, made by Vertex Pharmaceuticals with research supported by the CF Foundation. This is the drug that we have been so excited about, the one we have been waiting for, and it has not disappointed us! Maya has little to no cough, has gained weight, and is generally feeling better as far as CF symptoms go. She has not been on IV antibiotics for CF bugs since almost a year now! That is pretty amazing progress!!
Maya did have her share of challenges this past year too. She had surgery for kidney stones, had uncontrollable back pain and was not explained until an MRI found a sacral fracture. A couple of spinal blocks later, the fracture was healed, but the pain returned. So far, Maya has endured almost a year of pain and multiple hospitalizations, but no doctor could seem to explain nor fix the source of the pain. Once we found a doctor who identified a problem and a second doctor confirmed it, insurance refused to cover the procedure required to fix it! We don't think this is related to CF, but we don't know for sure.
While we have found a drug that helps ease the symptoms for 90% of people with CF, there are those 10% out there for whom we need to continue the fight. In addition, the drugs we do have are daily pills, none of them are a cure. So we need continue our efforts to raise money for the CF Foundation and the life-saving research it funds. You can help by making a donation of $25, $50, $100, or whatever you can afford. Donating online is quick and easy; just click on the DONATE button. Every dollar does make a difference. YOU make a difference and we will remain eternally grateful for your support!
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.