When I was diagnosed with cystic fibrosis 27 years ago as a little 10 month old, my family could not imagine the life that I am living now becoming a reality. I went to college, moved away from home, and got married four years ago. In 2016, my dream of becoming a mother came true, and this past June I graduated with my Masters degree in Social Work. At 27, I smile and laugh when I look in the mirror to see sprouting grey hairs. What a privilege it is to live long enough to do so.
CF is a disease that requires a daily hustle. I work hard to keep my lungs healthy as possible, doing three breathing treatments a day, taking my medicine, exercising daily, getting adequate sleep, and eating healthy calories. I check my blood sugars daily, care for our 3 year old son, and work a part time job. It’s no easy task, but well worth the work to live a full and joyful life.
I have peace of mind knowing that I’m not the only one working hard: The CF Foundation is hustling every day to ensure everyone with CF lives longer, fuller lives. I know they will not stop until we have a cure for everyone. Great Strides is our family’s way to take part in some of that work.
The Cystic Fibrosis Foundation directly improves my quality of life every day that I live. Most especially through its incredible investment in life saving drugs like Orkambi, Kalydeko, and Symdeko. My regular contact with my care center keeps me as healthy through checkups and antibiotics to fight infections as needed. The CFF assists patients through programs like Compass that help my husband and me navigate insurance and pharmacy issues. The Foundation’s dedication to finding a cure keeps me going, and inspires me to keep my body as healthy as possible for the cure one. day.
For our family, Great Strides means a chance to invite and involve others in our efforts to cure CF. It’s an opportunity to educate, increase awareness for CF, and of course, raise much needed funds to continue life-saving research and supportive programs for people living with CF. We thank you in joining us in these efforts, as we enrich and save lives through the CFF.
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.