Stephen S.

Graduate Recipient

"In honor of the 25th anniversary of the AbbVie CF Scholarship, choose an event (personal or cultural/historical) from the past 25 years and describe how it has impacted your journey with CF."

The event that is most significant to how I live as someone with CF happened over a year I spent away from college. I had decided to broaden my education by working in a research lab for part of the year and then carry out an independent study for the other part. For the study I lived in England at a center named La’Bri, where I read and discussed the intersection of society and religion. While I was there I stayed in an old manor which had a stained glass window that spanned two floors of the home. Each time I passed the window my eyes would follow the patterns in the colored glass leading to a Latin phrase set in the middle which read, ‘Dum Spiro Spero.’ At the time I didn’t know what it meant, but the words stayed with me even after leaving. When I was home I often thought of the phrase and the window it belonged to, however, it wasn’t until a year later as I was discouraged from a hospitalization that I learned it meant, ‘While I breathe I hope.’ From that discovery I have found incredible comfort in the phrase as it holds both an action, to breathe, and a prayer, to hope and it is from this framework that I have chosen to live. Each day my action is my research in rare disease, while my prayer and hope is for the renewed life offered by developing medicines for those with CF.


Stephen S.'s Artwork

Stephen S.'s Achievements

  • Ph.D. Student, Paul Trainor, Ph.D., The Stowers Institute for Medical Research, Kansas City, MO (May 2015 to Present) – My thesis project is to discover previously unidentified genes that play a role in the development of the rare, congenital disease known as Hirschsprung.
  • 3 Minute Thesis Finalist, Student Research Forum, Kansas University Medical Center, Kansas City, KS (March 2017)
  • Member, CF Adult and Family Advisors Group, Cystic Fibrosis Foundation (February 2016 to Present) – As a member of the CF Advisors group I have the opportunity to lend my voice as a patient and scientist to efforts in the CF community.
  • Co-Founder, Graduate and Post-doctoral Outreach, The Stowers Institute for Medical Research, Kansas City, MO (January 2016 to Present) – The outreach group at Stowers is an exciting opportunity to allow both students and post-doctoral fellows to connect with local schools within the community to promote and inspire students to take part in science education.
  • Oral Presentation, International Meeting of the Federation of Neurogastroenterology and Motility (August 2016) – My talk focused on my research in the lab studying how the loss of Vitamin A during development can lead to an absence of neurons in the gut resulting in Hirschsprung disease.
  • Scientific Panel Member, Rare Disease Town Hall KC, Kauffman Center, Kansas City, MO (February 19, 2016) – As a panel member I had an opportunity to speak about my experience as a researcher in basic science and a person with a rare disease to promote education and awareness about the needs of those in the rare disease community.
  • Madison and Lila Self Graduate Fellowship (April 2015 to Present) – provides special training to doctoral students in the STEM field by providing education in business, public policy, oral and written communication.
  • Science and Research Columnist, BioNews Services, LLC. (January 2015 to September 2015) - I wrote a weekly column, totaling 25 articles, on Cystic Fibrosis News Today concerning topics of research, drug development and life-style to advocate issues important to the CF community.
  • High School Life Sciences Teacher, Kansas City Christian, Prairie Village, KS (June 2013 to May 2014) – I had the opportunity to teach science to high school students from grades 9-12 to inspire a love for both science and creativity.
  • Beaver-Schmale Research Award Recipient, Wheaton College, Wheaton, IL (May 2013)