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.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to 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 not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, 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. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.