Join our team - Brooke’s Besties - and help us get one step closer to a cure for cystic fibrosis - a rare, genetic, life-shortening disease that makes it difficult to breathe and damages the digestive system over time.
When Kevin and I decided to start our family after 9 years together, we thought we had planned for everything. During our pregnancy, our doctor informed us that our genetic testing had come back, and we were surprised to find out we were both carriers of cystic fibrosis. Neither one of us had a family history of CF, any warning signs, or any knowledge of it. After meeting with a genetic counselor, we became terrified of the possibility that our daughter would have this terrible disease.
There is no way we could have prepared ourselves for hearing the words, "I’m sorry but your daughter will be born with cystic fibrosis.” It caused a sad, lonely, and desperate feeling that no parent should ever have to feel. That day, that moment, that phone call, will forever be etched into our memories, hearts, and souls.
Unfortunately, receiving a diagnosis of a disease that you know nothing about, other than that it’s incurable, leaves you drowning in uncertainty. Because let’s be honest, becoming a parent for the first time is scary. But becoming a parent for the first time -- during a pandemic -- to a child with cystic fibrosis is just downright terrifying. The emotional climb from feeling shocked and overwhelmed, to inspired and determined has taken time and support. And many reminders that it’s okay to grieve the life you thought you were going to have with your daughter.
Parents raising children with CF have a job like no one else. There are relentless treatments, medicine schedules, clinic appointments, hospital stays, etc. Each day, people with CF complete a combination of the following therapies: airway clearance, inhaled medicines, pancreatic enzyme supplements, and modulator medications. But more than that is the constant anxiety and worry of always wanting to make sure you are doing what is best for your child. Rest assured, we will fight hard and truly work together to give Brooke the brightest life possible. Cystic fibrosis is here to stay and our daughter needs us to pave the way and be her foundation.
Her fight is our fight.
Having a child with cystic fibrosis has inspired us to do all that we can to help fight for a cure. With supporters like you by our side, the Cystic Fibrosis Foundation continues to lead the way in the fight against CF, fueling extraordinary medical and scientific progress. The life expectancy of someone born with CF has doubled in the last 30 years. While there is not yet a cure, they’ve come a long way with treatments and guidance for managing and living with this chronic disease. And especially when treatment begins at a young age, the future is brighter than you might think. During the 1950s, a child with CF rarely lived long enough to attend elementary school. Today, many people with CF achieve their dreams of attending college, pursuing careers, getting married, and having kids of their own.
As we have struggled with feelings of isolation, we are even more grateful for the supportive people in our lives. Right now, it seems our support system doesn’t know how to help, and we don’t yet know what we need. We still have a lot of feelings and questions, and don’t quite know where to start.
You may be asking yourself, what can I do to help my loved ones navigate the fear and pain that is CF? You’re already doing it — you’re here, you’re listening, you’re learning, and you’re actively trying to figure out what’s needed. And for that, we thank you.
It's difficult to know where this crazy road will lead. But this we do know: we will take it one day and one breath at a time, with hope leading the way and you on our side. Because luckily for us, we have one of the best support systems around.
We will not let cystic fibrosis stand in Brooke’s way. Together, we can strive for a happy, healthy future for her and thousands of other people who breathe this life and fight this daily battle.
Let’s join forces and add more tomorrows!
Will you join us?
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.
To participate, just click on the "Join our Team" button. From there, you can make a donation or sign up to walk with us.
By joining our Great Strides team, you will be part of a tenacious and passionate group of people committed to ending this disease. Together, let’s make CF stand for Cure Found!
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.