Hi everyone! My name is Patrick Burns and I started this fundraiser to raise awareness about Primary Ciliary Dyskinesia (PCD). Prior to September 2016, my wife Tess and I had never heard of PCD. After the birth of our daughter, Lenny, we quickly learned of what this disease is and how it will impact us for the rest of our lives.
PCD is a genetic defect to tiny little cells in our respiratory tract called cilia. The defect in the cilia will cause lifelong risks of lung infections and irreversable damage to the respiratory system. 100% of our donations are going towards the PCD Foundation (pcdfoundation.org). The PCD Foundation's primary purpose is to address severe unmet needs in the PCD patient community, including: diagnostic challenges, lack of evidence to support therapies, inadequate demographic information and paucity of data related to the natural history of this disorder. The foundation is a voice for our daughter and everyone else suffering from this disease.
On May 5th I will run in the Colorado Half Marathon in affiliation with Running on Air. Running on Air was started by Mary Kitlowski. Mary has PCD and is an advocate for raising awareness about lung diseases and rare diseases. She raises awareness by running in races throughout the country with the assistance of a portable oxygen supply. When I saw Mary's story I was inspired. Knowing the challenges PCD patients face with simply breathing makes Mary's accomplishments so remarkable.
Thank you for taking the time to read our story. We are incredibly grateful for any donation. The PCD Foundation's efforts are hugely important to moving the needle in awareness and treatment of PCD. Ultmately improving the overall quality of life for our daughter and everyone else suffering from this rare disease.