I could start this letter with the statistics of Cystic Fibrosis , but like any other disease.... unless you are living in the household with the person that is affected, it is too hard to comprehend the complexity of their every day life. Instead I would like to share a story with you. In May 2013 , I was given the news that Kelly was chosen to receive a wish. When he came home from school. I ran up to greet him with the news. I said "guess What?!!! The center called today....and they want to grant YOU a wish. He immediately began to cry and buried his face in my chest.I "thought" he was overwhelmed with excitement and already KNEW what he wanted to wish, so I said "whats wrong? .... do you already know your wish? He looked me in the eyes and said " I wish I did not have CF anymore" this naturally sent me to tears. (after all it was the only wish he could have made that seriously could not happen at this time) After a couple years he did recieve his wish and we had a fabulous Disney Cruise. but the point is...... his true wish was NOT to go to disneyland or hawaii... His request was to remove this burden that controls his life,every single day. so my request to you is whether you have the ability to contribute $5.00 or $500.00 please consider the CF foundation. 100% of the procceeds goes to the research and development to cure this disease and your contribution is tax deductable. If you are not able to contribute financially, your support is always welcomed at fund-raisers and at the "Great Strides" walk which is conducted EVERY first saturday in May ( Snow, Rain or shine) He is so proud of his family and his special "kelly's Comrades" Please take a few minutes and register for Great Strides 2018. ( pre-registration just lets the Cystic Fibrosis committee know how many people to expect so they can make sure to have enough food and drinks for everyone) Thank -you to each person that took time to read this. We look forward to walking with you :)
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.