Benson "Buster" Robert Douglas was diagnosed with Cystic Fibrosis on December 27, 2012. After our initial shock, we decided that Cystic Fibrosis does not get to win. We decided that CF will not define our family, and it will not define Buster. Seven years later, we are continuing on our journey fighting CF and are so grateful to those of you that have joined us. Buster is so much more than CF.
Since entering the CF world, we have not only learned that CF is a very serious and life threatening genetic disease, but a disease with emerging life-changing treatments and increasingly hopeful outcomes for patients. We have felt an outpouring of love and support from people like you. Everyday we gain more strength in dealing with CF and talking about CF. The potential for a bright future for CF patients like Buster makes this year's Great Strides event, and the encouraging work of the Cystic Fibrosis Foundation, even more important.
CF affects approximately 30,000 Americans and approximately 70,000 individuals worldwide. To us, Buster is perfect. However, sticky mucus in his body hinders proper lung function and airway clearance. The increased mucus also prevents the release of pancreatic enzymes that allow him to absorb nutrients from the food he eats. On a good day, Buster takes at least 40 pills per day, as well as additional vitamins and medications to help his body absorb nutrients and fats from the food he eats. He spends at least 60 minutes each day working to clear his lungs of excess mucus through inhaled medications and chest physiotherapy. While this treatment regimen is time consuming, we are thankful for the development of the treatments that Buster receives each day. They are the result of ongoing research and development.
The Cystic Fibrosis Foundation has a unique and highly successful approach to developing drugs for a relatively rare disease. This drug development model, known as venture philanthropy, has created a robust pipeline of therapies that target the disease. It has been a model for other nonprofit health organizations and has been recognized by the National Institutes for Health and the U.S. Congress for it’s innovative impact. Nearly every approved CF drug available today was made possible because of the Foundation's venture philanthropy approach. The Cystic Fibrosis Foundation’s top priority remains accelerating the development of therapies that target the basic genetic defect. Through these efforts, the life expectancy of a child with CF has doubled in the last 30 years. These efforts include events like Great Strides, partnerships with drug companies, and the generous donations from those helping to achieve the goal of making CF stand for "Cure Found."
This year, we will walk on Buster's seventh birthday. We cannot think of a better gift for Buster than to be surrounded by family and friends all fighting to cure this disease that he battles everyday. We hope that you can walk with us in Encinitas on May 3, 2020 in support of a bright future for Buster and all CF patients worldwide who are living on the brink of a dramatically more hopeful future. Your support means everything to us. Thank you for joining us in our fight. Thank you for helping us make sure that CF does not get to win. Thank you for your never-ending love, support and kindness. We cannot wait for CF to stand for “Cure Found!” Thank you for supporting our us along the way.
Laurel, Michael & Buster
“Given the promise of today’s medical technology and research insight into cystic fibrosis, the Cystic Fibrosis Foundation believes only one barrier stands between patients and a cure: the number of dollars invested in therapeutic research.”
-Robert J. Beall, past president and CEO of the Cystic Fibrosis Foundation
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.