This year we are all in for fundraising for the Cystic Fibrosis Foundation (CFF) by participating in the Great Strides Walk in May and the CF Cycle for Life in August.
Meghan is doing fantastic and is graduating from the University of Pittsburgh on May 1. She is an awesome young woman, and we are most proud of her.
Recent years have seen huge advances in treatments for most with Cystic Fibrosis. 90% of those diagnosed with CF have modulator therapy available to them which has led to huge improvements in health for many. Current research is evaluating these therapies in younger people with CF, evaluating the long-term benefits and risks of these therapies, and still searching for the elusive cure. Research and clinical trials are also needed to find effective therapies for the 10% of patients who are not helped by these therapies or who cannot tolerate their side effects.
The CF mantra is “Until It’s Done” and it is not yet done. The CFF has shown us how effective concerted efforts to address treatment for genetic conditions can be. CF used to be a disease of childhood. Today, 57% of those diagnosed and living with CF are adults. This is a blessing but also brings new treatment challenges. We have been personally blessed that Trikafta works for us. Also blessed that Meghan’s journey has not been as hard as many. The future is bright but research and clinical trials cost money. Finding a cure for all and a treatment for the remaining underserved 10% will be challenging.
Please, if you can, donate to help make CF stand for Cure Found.
Please be one of Meghan’s Allies and an ally to all people with 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.