Join our team and help add tomorrows! Three years ago, Zachary came into this world. The perfect addition to our family. He is the happiest little guy, adventurous, and easy going. Everyone who meets him, just loves his smiles and his energy.
He has always been full of surprises, and that remained true when we got the call just after his one-month checkup that his something was off in his newborn screening. At just two months old Zachary was officially diagnosed with Cystic Fibrosis. I had heard of it, but had no idea what this disease entailed. After a quick google search and key phrases, "life expectancy 40", 'infertile", "deadly" popped up, our hearts were broken. How could we have unknowingly given this perfect little boy this horrible disease.
After the initial shock and sadness, we educated ourselves, reached out to the Cystic Fibrosis foundation, and met with doctors, we found a lot of hope. About a million questions later we learned that the world of Cystic Fibrosis is aggressively changing and what people once knew of the disease, will not be the future of it. This year Zach has become much more independent with his daily treatments. He knows to take his enzymes with meals and sits through his treatment like a champ. We are so fortunate to not have any hospital stays or major illnesses yet. We have been anxiously awaiting approval of Trikafta. We are so grateful and fortunate for the hope that we have and the health of Zachary. He is our feisty and compassionate CF warrior! We were overwhelmed with support from everyone who joined our team and donated last year. We were able to raise over $4,000 because of the love and support of many of you.
Because of the research and work of this foundation, the Cystic Fibrosis I googled, will not be the Cystic Fibrosis our boy lives with. But we feel compelled to keep the research and momentum going until there is hope for everyone living with Cystic Fibrosis. Our son is fortunate that he will get to benefit from the groundbreaking medication Trikafta, that will hopefully change the face of Cystic Fibrosis, and make it a manageable condition. 10% of the Cystic Fibrosis patients still are looking for their miracle. Adults living with these conditions still need our help. Zachary will always live with this disease and benefit from breakthroughs in treatments and medication. 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. Will you join us? To become a member of our team, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. We will not rest until all those with cystic fibrosis have a cure. The time is now. Together, we can conquer this disease. Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF -- join our team today!
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.