As a lot of you know, my little brother Will was diagnosed with cystic fibrosis when he was six months old. Ever since then we have been fighting against the disease to make sure that, in the future, he can breathe a little bit easier and feel a little bit better.
Cystic fibrosis is a genetic disease that primarily affects a patient's lung function. There are approximately 30,000 Americans living with cystic fibrosis. As of now, there is no cure for the disease. As a CF sister, I have watched Will spend hours doing treatments, take a bunch of daily medications and make countless trips up to the hospital.
This has been such an exciting year for many in the CF community as some of the therapies that have been in the drug pipeline have received FDA approval! While Will is one of the lucky ones who benefits from the newest medications, there are many others with different CF mutations who are waiting for their breakthrough. Everyone with CF is patiently waiting for the cure that will let them lead their life free of burdensome daily treatments. We are so grateful that the CF Foundation uses its money so effectively. 85 cents out of every dollar goes directly to CF care and research. Your contributions help buy the science that will lead to a cure.
I feel so lucky to have walked in the Great Strides Walk-a-Thon for the past 25 years of my life, and I am excited to once again lead up a team of walkers and sponsors! I'm so grateful for all of the wonderful family and friends who have walked by my side or sent encouraging love to support the walk's success.
This team page allows you to sign up to walk in the Great Strides Walk-a-Thon on Saturday May 7th at Slater Park in Pawtucke to join us virtually to log our miles walking for a cure! I know that together, we are adding tomorrows to the lives of my brother, Willy, and so many people living with CF by supporting the search for a cure.
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.