Have you heard of Cystic Fibrosis but aren’t exactly sure what the disease entails? Here is a little background info:
Cystic fibrosis is an inherited chronic disease that affects the lungs & digestive system of about 30,000 children & adults in the U.S (70,000 worldwide). A defective gene & its protein product cause the body to produce unusually thick, sticky mucus that: -clogs the lungs & leads to life-threatening lung infections -obstructs the pancreas & stops natural enzymes from helping the body break down and absorb food
For those of you who may be unaware, Sienna was diagnosed with Cystic Fibrosis shortly after birth. Sienna is now 8 years old and she continues to amaze our family with her strength and perseverance daily while battling CF.
We need donations to help find a CURE for Sienna and all others fighting this disease. Please click “donate to a Team Member” at the top of this page.
We would love to see you at the Great Strides Walk on Saturday, May 14th at Onondaga Lake Park. Check in begins @ 10:00am and the walk begins at 11:00am. Please register under “Strides for Sienna”.
Our family thanks you in advance for your continued support and we hope to see you on 5/14! With love from our family, Lenny & Lisa DelVecchio John & Anne Flaminio
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.