Join our team and help us get one step closer to a cure for cystic fibrosis!
For too long, cystic fibrosis, a rare, genetic disease, has robbed people of tomorrows – progressively limiting their ability to breathe and tragically shortening life. There are approximately 30,000 Americans living with CF. We walk in Great Strides for them.
We have been participating in this walk for 19 years, getting closer to a cure each year. It's that time again! Great Strides, the annual fundrasier by the Cystic Fibrosis Foundation, is right around the corner and Jacob's Heroes is once again gearing up to (virtually) walk for a cure. My cousin Jacob was diagnosed with cystic fibrosis (CF) at 1 month old. He is now 19 and lives the same life as any other young adult. Well, not exactly. Before this year, he would spend at least 2 hours a day doing breathing treatments and take 30 pills a day just to stay healthy. That is the life of someone living with CF. However, thanks to amazing new medications such as Trikafta, he no longer has to do breathing treatments everyday and is able to live a simpler life. Sadly, Trikafta does not work for everyone with CF.
Cystic fibrosis is a life-threatening illness that affects the lungs and digestive systems of those born with it. There are approximately 30,000 Americans living with cystic fibrosis with over 1,000 different mutations. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. While there is currently no cure for CF, there is HOPE!
Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We've come so far, but there's still so much work to do. I will not stop striding until all those with cystic fibrosis have a cure. We will not leave anyone behind.
We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Together, we can make CF stand for Cure Found. Please help me reach my fundraising goal!
This past year the life expectancy for CF patients rose to 47 years. This is not enough though! While, new treatments have been discovered to help in the treatment of the effects of CF by helping stop CF in its tracks, they do not work for everyone just yet. That's why it's so important for the CF Foundation to continue in the diligent work they've done over the years. In order for a these new medicines to reach everyone living with CF and eventually for a cure to be found, there needs to be funding.
To join our team, simply click the "join my team" link to the right. Thank you so much for your love, support and prayers!
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.