I am excited that the Cystic Fibrosis Foundation has surpassed $100 million in research funding through its Infection Research Initiative and that it promises to continue to support infection research at the same rate as the past three years. I am hopeful that the patient community will hear more about funding updates for new infection research as we move forward.
Ella is a person with cystic fibrosis, a writer, a patient advocate. Having a science education and having worked in a microbiology lab, she has utilized her knowledge and health experiences in her involvement serving on various research committees -- including the CF Foundation Infection Research Steering Committee and Protocol Review Committee. She was a co-chair for the inaugural CF virtual research conference, ResearchCon, and was named the 2019 CF Ambassador for the Virginia Chapter. She is an advocate for the development of novel therapies for the treatment of antibiotic-resistant infections and speaks publicly at conferences, meetings, and to companies about the value of patient perspective in healthcare. Through her passion for writing, she distills clinical information for patient communities, and shares about the hardships yet triumphs that comes with living with a chronic illness. She aims to affect the healthcare landscape by raising awareness of rare diseases, promoting self-advocacy to patients, and providing valuable insights to organizations. When she is not taking care of her health, she enjoys spending time with friends and traveling as much as she is physically able. Learn more about her work at on her website and follow her life experiences on her Instagram.
Preparing to be listed for lung transplant taught me a great deal about what to expect during the transplant process and helped me form bonds with others going through the process with me.
As co-chair of ResearchCon, I had the opportunity to work with other members of the cystic fibrosis community to help set the agenda for a virtual research conference on CF infections. The event left me in awe of the scientists and the work being done around the world to fight this disease.
After three surgeries to fix a collapsed lung, I still managed to travel abroad. It took a lot of planning, help from family and friends, and simply not caring about what other people think.
Facing a possible lung transplant led me to rethink how I wanted to live my life.