Join Jessica's Mafia For A Cure to help blow CF away!!!! My friends and family fight right along side me in every day life and in helping fundraise to find new treatments and a cure. We have been doing the Great Strides Walk since the begining and we look forward to it each year. I was born with Cystic Fibrosis and diagnosed at age 3. Most people if you were to ask them, they have no idea what CF is. Cystic Fibrosis is a life threatening genetic lung and digestive disease. In the United States alone about 30,000 children and adults suffer from this disease (70,000 worldwide) and about 1,000 new cases are diagnosed each year. CF is caused by a defective gene and its protein product that causes unusually thick and sticky mucus. This mucus clogs up the lungs and leads to life threatening lung infections. It obstructs the pancreas natural enzymes that keep it from breaking down and absorbing food properly. Symptoms that a CF patient would have would include salty tasting skin, persistent cough a lot of times with phlegm, frequent lung infections, wheezing and shortness of breath, poor growth/weight gain regardless of appetite and frequent greasy/bulky stools or trouble with bowel movement. That is just the basic breakdown of what Cystic Fibrosis is and what comes along with having this disease. But it goes much deeper and more complicated than that on every level. We need your help in making that progress to a CURE and we are so close. In 2012 the first drug was approved that treats the underlying cause of CF, that's GREAT NEWS! Today I am 39yrs old and going strong thanks to all the breakthroughs we have had in medicine and treatments. I am on the newest breakthrough that was approved in 2019 called Trikafta!! It has been life changing and that would be an understatement! No matter how much progress is made we still lose countless young lives every day to this horrible disease.
BECAUSE OF THE EFFORTS OF THE CF FOUNDATION AND EVERYDAY PEOPLE LIKE YOU WHO DONATE TO HELP FUND RESEARCH FOR NEW TREATMENTS, EDUCATION, AND CF CARE TO NAME A FEW. CF PATIENTS LIKE MYSELF AND OTHERS AROUND THE NATION GET TO EXPERIENCE THOSE TOMORROWS WE WALK FOR!!!! THIS YEAR JESSICA'S MAFIA FOR A CURE IS BACK CONTINUING TO HELP BLOW CF AWAY! WE ALWAYS TRY TO GO BIGGER AND BETTER EVERY YEAR. I ENCOURAGE YOU TO PLEASE SHARE THIS LINK TO MY PAGE WITH OTHERS TO HELP GET DONATIONS. I THANK YOU VERY MUCH FROM THE BOTTOM OF EVERY CF PATIENTS HEART <3 REMEMBER TO ALWAYS LIVE*LAUGH*LOVE :) JOIN ME IN THE FIGHT!!!!
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.
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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:
FOR YOUR SAFETY AND THE SAFETY OF OTHERS: