xan nowakowski

director

Dr. Alexandra "Xan" Nowakowski is a medical sociologist, public health program evaluator, community advocate, and peer counselor living with cystic fibrosis. You may recognize them from The CF Warrior Project Book or various Cystic Fibrosis Foundation conferences. They also run support groups for LGBTQIA+ adults with CF in partnership with the Attain Health Foundation. Being openly queer and agender, as well as multiethnic and part of "the 10%" of patients without mutations qualifying for CFTR modulator drugs, gives them unique insight into questions of inclusion and justice in CF community. Born in December 1983 with very rare CFTR gene mutations, Xan had a long and complex road to a conclusive CF diagnosis despite being sick since birth and having their first sweat test in early childhood. They now receive care at the Orlando Health adult CF clinic in central Florida. Xan also works full-time as an Assistant Professor at the Florida State University College of Medicine regional campus in Orlando. In their work with FSU COM they spend a lot of time looking at connections between health and social life, and exploring how programs for people with different health conditions work. Their work focuses strongly on the experiences and needs of people aging with chronic diseases, which is basically studying what they know best! In addition to living with CF, Xan deals with PTSD from a long history of intimate partner abuse. Their experiences of chronic illness and complex trauma have helped them make an impact for others. Along with their spouse Dr. J Sumerau, Xan runs an outreach project called Write Where It Hurts for scholars who bring their lived experiences of hardship into their professional activities. Xan holds a PhD and MS in Medical Sociology from Florida State University, an MPH in Health Systems and Policy from Rutgers University, and a BA in Political Science from Columbia University.

Connect with us
Connect with us
subscribe!

Please CLICK HERE to 

subscribe to our newsletter! 

*The CF Roundtable does not give medical advice. Any medical opinions represented in these articles are those of the writer and do not represent the views of USACFA, any of our community partners, or any other group or individual. We strongly suggest you consult your doctors regarding any medical references and before altering your medical regimen in any way. USACFA does not endorse any products or procedures. 

Registered Charity Number : EIN # 93-1036770

© United States Adult Cystic Fibrosis Association 2019

  • Black Facebook Icon
  • Black Twitter Icon
  • Black Instagram Icon
  • LinkedIn - Black Circle
  • Black Facebook Icon