We are excited to let you know that this year we are finally getting back to some what normal routine and the CF walk will be held in person! We want to share the last year's progress with you. Abby was started on a new medication called Trikafta and we are seeing some improvment. It will never restore the damage CF has done to her body but it gives us hope her lungs won't deteriorate as quick. It is too early to say if there will be any complications but we are taking it one day at a time. She has to have her blood work drawn every three month for a full year to make sure her liver is ok which she is not a big fan of but she is taking it like a champ! Her breathing at night is not as labored and that makes our hearts full. Abby has been swiming on a swim team and is able to keep up with her teammates which is really impressive. These great strides in CF medications and treatments would not be possible without your support and donations. We would like to thank you all! Below is Abby's story if you would like to read it.
The Cassidy Family
Abby was diagnosed with Cystic Fibrosis (CF) when she was only one week old. From then on it has been a roller coaster kind of journey. From sweat tests to DNA tests to treatments and check ups every 2-3 months kind of journey. CF is a genetic desease in which body makes very thick, sticky mucus. This mucus can't be cleared by the body and it causes problems in the lungs, pancrease , and other organs. She had her fair share of struggles to gain weight like the doctors wanted her to, respiratory infections that kept us praying her lungs wouldn't get worse, and doctors' visits that absolutely terrified her when she was little. She is almost 12 now and over her fear of doctors and procedures. Well maybe except for throat cultures because she still doesn't like those :-)) She loves summers and swimming in the pool. She still loves her stuffed animal Cedric who's been by her side and traveled lots of places with her. This year we are walking to support Abby and all others who battle Cystic Fibrosis on daily basis. She appreciates every one of you who can join her team, donate or walk for cure.
By joining our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. We will not rest until all those with cystic fibrosis have a cure. The time is now. Together, we can conquer this disease.
Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF -- join our team today!
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.