Another year around the sun, and we are still giving thanks for your continued support of cystic fibrosis research. You are making it possible for parents like us to celebrate a brighter, more hopeful future for our children. But, our work is not finished yet.
Our daughter Bobbie, now 2.5 years old, still faces the daily reality of living with a progressive genetic disease.
Cystic fibrosis (CF) causes persistent lung infections and limits the ability to breathe over time. It also affects the pancreas and other parts of the body. Bobbie spends thirty minutes every single morning doing chest physical therapy and an inhaled nebulizer treatment. She takes a handful of pills before every meal and ends every day with an additional twenty minutes of chest physical therapy. Most days she handles it all like a dream and we are so proud of her. And on the other days? Well, she is a toddler after all and we’re proud of her on those days too. Big brother Creek (or a slew of cousins on the weekend) is almost always by her side at treatment time and that makes everything better for all of us.
A life-changing new drug called Trikafta was approved in 2019 and it’s our sincere hope and prayer that this drug will drastically change and improve the course of Bobbie’s life once she’s old enough to take it. Trikafta is not a cure but it is doing amazing things for the patients currently taking it. Although we expect Bobbie to benefit from the drug, approximately 10% of cystic fibrosis patients will not be eligible for it due to rare gene mutations. For these reasons, we continue to fundraise and advocate for cystic fibrosis research.
Last spring, generous donations from our friends and family totaled more than $30,000 for the Cystic Fibrosis Foundation. You made that possible! Every penny we raised went directly to the foundation whose mission is to cure the disease.
Will you consider supporting Team Bobbie again this year? The Great Strides Virtual Walk will happen Saturday, April 10th and you are invited to participate from wherever you are. Just get outside and go for a walk in your neighborhood or a hike in the woods. Post a photo or short video on social media and make sure to use the hashtags #TeamBobbie #GreatStrides #CFawareness #CysticFibrosis #FightCF and definitely tag us personally on Instagram or Facebook! We will share your posts and celebrate the good work happening in the CF community.
Click on "Join this Team" or "Donate to a Team Member" to sign up as a virtual walker and/or to make a donation.
Thank you again for supporting us, our daughter, and all people living with cystic fibrosis. We are so grateful for you!
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.