You would never guess upon meeting Fisher that there is anything atypical about him. He is active, joyful, and endlessly curious about the world. We are so grateful that Fisher has been healthy, but reality is that for a child with CF, "healthy" includes 20 pills, 3 nebulizer treatments and an hour of chest physiotherapy every single day. It means trying to get as many calories as possible into every bite and constantly worrying about his nutrition.Avoiding crowds to try to keep his lungs healthy and worrying over exposure to things that most parents don't think twice about. Endless blood draws, doctors appointments, x-rays, etc.
Recently, there have been huge advancements in medications available to those with CF including the approval of Trikafta, a drug that that will change the lives of 90% of those who suffer from the disease. Unfortunately, the genetic mutations that cause Fisher's CF are quite rare and he is the only individual with his combination. Because of this we are really appreciate the CF Foundation's commitment to "no mutation left behind".
Like most moms, I think about my son's future every day. Unlike most moms I wonder if my child will be healthy enough as an adult to have a career that he loves or to meet the partner of his dreams. The quality of life for people with Cystic Fibrosis has come such a long way in the past 50 years. Today, people with CF are living into their 30's and Fisher's generation is expected to live even longer. But as a mom I want more than a chance at middle age for my sweet, funny little boy. I want nothing more than for CF to stand for Cure Found. For him and the 30,000 others fighting along side him. Please consider making a donation to Team Fisher and help to further the huge strides that have been made for people like my son. Truly, every dollar counts in this 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.