About Me

Background & Education

Jeneva Stone's creative work focuses on the disabled body as a source of wonder, the emotional impact of biological difference on families, and on integrating the sciences of genomics and physics with literature. 


On the lighter side, she considers herself a practical g/i nurse, queen of the medical necessity letter, keeper of the family exchequer, unlicensed physical therapist, and knowledgeable wheelchair mechanic.

 

  • Warren Wilson MFA Program for Writers, MFA 2007, poetry 
  • Columbia University, PhD 1994, English, Renaissance literature 
  • Middlebury College, BA 1986, English/creative writing, magna cum laude  
     

Awards

  • MacDowell Colony Fellow, April/May 2012, nonfiction: memoir
  • Millay Colony Fellow, September 2012, Wallace Foundation Fellow, nonfiction: lyric essay   
  • White House Champions of Change nomination, 2015, in Precision Medicine  
  • Pushcart Prize nominations, 2016, 2014, 2007 
  • Mellon Fellowship in the Humanities, 1987-88, 1988-89; Mellon Dissertation Fellowship, 1992  
     

Arts Activities

  • Bethesda Teen Writers Group, co-leader, a program of the Maryland Writers Association and the Montgomery County Public Libraries; assistant editor for teen anthology, Emerging Voices (February 2016—present)  
  • CAREGIFTED, curator for The Giver is Gifted blog, representing caregiver voices in the arts; assist with fundraising (January 2016—present)  
  • Pentimento: A Journal of All Things Disability (shuttered 2016), contributing editor (2015 – 2016)  
  • Tupelo Press 30/30 Project, Volunteer Fundraiser (February 2014)
  • Alice James Books, Volunteer Fundraiser and Public Relations Volunteer (2003 — 2008)   
  • Juror, Moving Words Poetry Competition 2008, Arlington VA
     

Presentations & Interviews

  • The George Washington University School of Physical Medicine, April 21, 2017, “Pediatric Physical Therapy: The Parent Perspective,” guest lecture for The Management of the Pediatric Client/PT8320, Marisa Birkmeier, assistant professor, Washington DC. 

 

  • Amplify Hope: Crowdfunding in Genomics, Empowering Patients in Their Journey, January 2016, “Rare Disease Patients: Is the Fault in Our Stars?,” Rare Genomics Institute, Four Points Sheraton, San Diego CA.  


     

Rare Genomics Institute arranged my son’s genome sequencing; I was interviewed in the following articles & presentations about our family’s experiences on behalf of RGI: 


  •  “With Insurers Reluctant to Pay for Genomic Testing, Some Patients Turning to Crowdfunding,” by Monica Heger, GenomeWeb, August 4, 2015

     

  • TEDxMidAtlanic Conference, October 2013, interviewed in talk ("Start Now") by Dr. C. Jimmy Lin, Founder, Rare Genomics Institute, on rare disease and genomic medicine, Sidney Harman Hall, Washington DC.  


  • Kickstarting a Cure,” by Noah Rosenberg, Narratively, July 18, 2013 (reprinted in Salon, July 25, 2013) 

 

  • “Prick My Baby's Foot: Whole genome sequencing at birth can catch rare genetic conditions & help early treatment,” hosted by Nancy Redd, HuffPost Live, January 8, 2013  


  • “Jimmy's kids,” by Virginia Hughes, Johns Hopkins Magazine, December 3, 2012  


  • “How do traditional and social media converge to help those with rare diseases?,” by Mary E.  Harris, Sound Medicine, WFYI Indianapolis (NPR podcast), November 18, 2012  


  • “Orphan diseases find a champion,” by Melanie Ave, Faith & Leadership (Duke Divinity), August 14, 2012