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Amanda H.

Undergraduate

"How has your journey with CF shaped the problems you want to solve and the impact you hope to have on others?"

My refrigerator is covered in postcards from around the world. Some I mailed home to myself while traveling, others were sent by family and friends who think of me wherever they go. On my hardest days, I stand in my kitchen reading them, reminding myself how much life I have been able to live and how deeply loved I am by the community around me. For most of my formative teenage years, I believed this kind of independence would be impossible for me. After being diagnosed with Cystic Fibrosis (CF), my world as a 10-year-old little girl suddenly became centered around medications, hospitalizations, uncertainty about my health, and what my life would look like living with this new condition. While most teenagers begin developing more independence in preparation for college, I was becoming more dependent on my family. I struggled to imagine myself living alone, traveling independently, or building a life far away from my family because my health felt unpredictable for so long. My reality began to change after I started taking CF modulators. Opening my own cleaning business in Delaware was the first time I realized my future could be different, maybe even brighter than I once believed. As dealing with my health became more manageable, I found my possibilities for life expanding beyond hospitals and doctor visits. That paradigm shift eventually drove me to move to Washington, D.C., pursue higher education, and begin creating the kind of future I once only imagined from a hospital room window. Living with CF has shaped the problems I want to solve because I understand how easily chronic illness can limit a person's ability to participate in the world around them. People often say to "just take care of your health" without understanding the financial and emotional burden that can come with it. Taking care of my health has meant missing work for appointments, dedicating days to navigating insurance and billing issues, and anxiously waiting to see whether I could afford the copay just to stay healthy. No human should have to choose between health and affording food. These experiences are what sparked my interest in advocacy and healthcare policy. I want to help create systems that make independence more accessible for people living with chronic illnesses, especially young adults trying to build lives of their own. Whether through policy work, community advocacy, or creating spaces where people feel understood and supported, I hope to help others feel less limited by their illness and more empowered to participate in the world around them fully. Independence should not be a privilege reserved only for healthy people. Today, the postcards on my refrigerator represent much more than travel memories. They are reminders of movement, resilience, community, and a future I once believed impossible. Most importantly, they remind me why I want to help create a world where people with chronic illnesses feel capable of building full, connected, and independent lives, too. Life is meant to be lived.

Amanda H.'s Artwork

Amanda H.'s Achievements

  • Full time Nanny
  • Competing Thespian
  • Tennis
  • Marching Band
  • Country Swing Dancing
  • Volunteer Inspira Dance non profit in D.C.
  • Student Government Treasurer 2017
  • Student Government Vice President 2016
  • AP 3D Art
  • Concert Band
  • Volunteer in CF research studies at Johns Hopkins