Erin E.

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."

One of my first, and most frequent, memories of grandpa is of him telling me, and whoever else was around, that I was “the writer of the family.” I don’t know why he chose me, there was just something he saw in me that I didn’t yet see in myself. Him believing in me made me want to be the writer he thought I was. So, from a very young age I wrote stories and poems that I would present to my parents and to him to read. When I traveled anywhere I would insist on sending him a postcard. When I left home after high school to travel, and then go to college, I would write to him every few weeks. Long letters about what I’d been doing, and the things I’d seen. To him, I wasn’t the one with CF in the family, I was the writer. It’s because of him that I’ve spent my whole life following this dream of becoming a writer. Listening to his voice in my head telling me it will happen. Even when I’ve been very sick, or in the hospital, I’ve always had my writing to get me through. He knew something then that I have hesitantly over the years come to recognize in myself. So, when he passed away in 2003 I found every single one of the stories, poems, post cards and letters I had ever written him I knew, more than ever, it was time to follow my dreams.


Erin E.'s Artwork

Erin E.'s Achievements

  • Program Coordinator for the Cystic Fibrosis Lifestyle Foundation for the last 10 years
  • Selected as a recipient of the CFF Impact Grant (on behalf of the CFLF)
  • Participant and fill-in coach for coed softball summer league team
  • Writer and coordinator for the Cystic Fibrosis Lifestyle Foundation blog, one personal blog received over 67,000 likes and shares
  • Has helped organize and participate in Champ's Challenge for the last 10 years, large cycling fundraising event to support the CFLF each year
  • Organizer and participant in writers' workshop in Montpelier Vermont
  • Writer and editor for the Salty Life (A magazine for CF adults)
  • Worked with legislators to get May named "CF Awareness Month" in Vermont
  • Participated in numerous clinical trials in order to advance research in Cystic Fibrosis
  • Built my own house (with the help of my father and husband) in 2016