Lilian was diagnosed with Cystic Fibrosis, a hereditary disease affecting primarily the pancreas, lungs, and digestive system at just 2 weeks old. Terrified and heartbroken, Brian and I decided almost immediately that the current life expectancy of 40 years (40!?) is unacceptable. This is not OK.
Now seven years old, Lilian is a spunky, adventurous, and fiery little girl! She looks perfectly healthy, but inside her little body there's a battle being fought every day. Lilian's pancreas is unable to produce digestive enzymes to break down and absorb food; when she was 6 weeks old we learned to spoon feed her special synthetic enzymes to replace what her pancreas cannot provide. Each day Lilian takes between 20 and 30 enzyme capsules. This is considered an amazingly small amount for her age and size. In June 2015 Lilian added the new drug Kalydeco to her daily regimen. Kalydeco targets CF at a cellular level, slowing the progression of the disease in her body. We are THRILLED with the results so far! Lilian's lungs are clear as of her last check up, but as she ages (and exacerbated by common colds, infections, naturally occurring bacteria, etc.) her lung function will deteriorate. To what extent, we simply can't predict. Hospitalizations, IV antibiotic therapy, percussion vests, lung transplants, diabetes, sinus issues...these are things no parent wants to plan for.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them. We walk for Lilian.
All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising. This is our way of coping with and fighting this disease - we hope you'll join our fight!
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.