My 5 Takeaways From ResearchCon

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. 

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Gabriella Balasa
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The cystic fibrosis community -- people with CF, their families, and friends -- came together virtually on Rare Disease Day to share knowledge and form relationships with clinicians and researchers to discuss the latest research and insight about CF infections at the first ResearchCon. As co-chair for the Feb. 28 event, I worked with a group of CF community members for several months, brainstorming topics and creating the content we delivered. Only after I participated in several sessions and observed the engagement from attendees did I realize how monumental ResearchCon really was. I'm so proud to be a part of this community. Here are my takeaways from this event, which logged nearly 700 attendees:

  1. The CF community is comprised of incredibly intelligent people. They understand biological mechanisms and are familiar with prior research, as evidenced by the questions posed to the researchers and speakers. I recall on more than one occasion, a doctor remarked about the insightful nature of the question asked. It's clear that those of us with CF and our families are thinking critically about treatments for CF and are not content with a layman's grasp of it. This leads to my second point.
  2. Our desire to gain the knowledge and tools we need to understand the science, to seek clinical trial opportunities, and to suggest new avenues of research is rapidly growing. As the lives of more people with CF reach well into adulthood, the importance we place on understanding our health and our futures leads us to seek information and the best possible care for ourselves. The rapid advancements in research in recent years parallel our interest in being active participants and collaborators in research and care. We are empowering ourselves to better our lives. The value of our roles in communicating and creating the future of CF treatment with our doctors is immeasurable.
  3. There needs to be more direct patient involvement in the development of research questions and methods. Day to day, we live with the effects of CF, and we pay attention to symptoms and treatment regimens closely. We track changes in our body's reactions and form hypotheses for these changes. We have ideas for what could make our lives better and what questions we need answers to. We positively contribute to collaborations with research teams, but I hope that researchers could tell from this event that we are capable of more! I hope there will be many opportunities for forging more collaboration and patient involvement in future research development, because ... 
  4. There are still a lot of unknowns in CF care. There were instances where researchers said, “I am unaware of any research being done in regard to that,” and, “We don't know what to recommend for that because it hasn't been researched enough.” These responses further support my belief that we still have a long way to go in optimally treating all aspects of CF -- from gut health to sinus disease. We need to get to a point where we do know the answers to a lot of these current unknowns. With that being said I am in amazement of …
  5. The breadth of CF research today spans many different facets of the disease. For infection research alone, which this ResearchCon focused on, there were so many knowledgeable doctors and researchers delivering bountiful information, and indirectly, hope for our futures. Knowing that a much larger group of individuals around the country and the world are working on many other aspects of CF -- some of which we don't even know much about yet -- is amazing. This event didn't even scrape the surface of the number of people committed to research to better the lives of people with CF.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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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.

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