I hope eveyone is well and has stayed healthy and safe during this crazy pandemic!! I am so excited to announce the walk is BACK IN PERSON!!! That's RIGHT!!! We finally get to see all of your BEAUTIFUL AMAZING Faces!!! It will be held Saturday 4/30 @ Cedar Crest College. We will be ordering shirts for our team like we have done in the past. They are $20 (half of the proceeds with go to the foundation as a donation and the other half will go towards the purchase of the shirt). If you would like one please let me know by 4/1 at firstname.lastname@example.org.
For those of you that are new to us this year, CF is a big part of our lives. We have 4 beautiful and amazing children, two of which were born with CF. Unfortunately, this disease has affected our family too many times. We lost Johnny's sister, Suley, 15 years ago at only 22 years of age, due to complications pertaining to CF.
Cystic Fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the abilitly to breathe. In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria which leads to infections, extensive lung damage and eventually respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that are needed in the body to break down food and absorb vital nutrients. As of today, the life expectancy of someone who has CF is 37 years old, and there is NO CURE!! .
Here is a little background and update on my CF Troopers!!
Our beautiful babygirl ~ Ashley Paige was diagnosed at 6 weeks old. She is now a AMAZING, VIBRANT, LOVING 15 year old that just started hight school ~ OMG!! Can you believe it!!! So far she has had a GREAT year ~ no admittance to the hospital ~ and they are happy with her progress. She is now going on 2 years of being on the drug TRIKAFTA which stops the progression of CF. She has been doing AMAZING on it!!! She has been doing Awesome things this year with her musical talents which include singing at many different events with tons of people!! She is absolutely BEAUTIFUL out there and performs like the star she is and we couldn't be more PROUDER!!
Our little monster ~ Jacob Chase was diagnosed at 3 weeks old. This little trooper, who was born 6 1/2 weeks early, has definitely had some battles in his path, but he always seems to overcome any obstacle. He is now 8 years old and in the 3rd grade!! This has been a FANTASTIC year for him. He also began TRIKAFTA this last year!! And doing AWESOME on it!! His weight has finally picked up and we cant be more happier!! He loves baseball, soccer, and ofcourse Nerf play!! Haha!
So I am reaching out to you for your HELP to reach my goal off $10,000. Nearly$.90 of every dollar goes straight to vital CF programs that support research, care and education for Cystic Fibrosis. With your help a cure is in our REACH!!
We hope to see EACH & EVERY ONE of you Saturday 4/30!! If you would like to join us ~ Please click the "Join Our Team" AND Donate!
Every little bit helps make Ashley, Jacob and all those fighting CF live healthier and longer lives!!!
As always our family can't THANK YOU enough for all the continued LOVE & SUPPORT!! We are so truly BLESSED with the AMAZING family and friends we have!!
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.