Author & Advocate
Jeneva & her son Rob volunteer for several health care & disability rights groups. They are members of Little Lobbyists, a family-led organization advocating for the health care needs of children with complex medical needs and disabilities; Jeneva is the Little Lobbyists blog manager. Jeneva serves on the Montgomery County, Maryland, Commission on People with Disabilities. She also volunteers for the Rare Action Network, part of the National Organization for Rare Disorders. Both she & Rob are members of the Self-Directed Advocacy Network (SDAN). Jeneva & Rob have delivered remarks at U.S. Senate press conferences, at health care rallies & have testified before the Maryland General Assembly.
Photo: Rah Foard
Rob’s Rare Disease Story
FEATURED
Photo: Rah Foard
Rob & I were featured in this NPR/KHN story, “Americans with disabilities need an updated long-term care plan, say advocates”
“No one will just sit down and tell me what is going to happen to my son,” she says. “You know, what are his options, really?”
My essay, “Remaining Silent: The Facts,” published in APR, was listed as a “Notable Essay of 2020” in Best American Essays 2021
Jeneva Stone is a poet, essayist & advocate. She’s the author of Monster (Phoenicia Publishing, 2016), a mixed-genre meditation on caregiving, disability & medicine. Her essays & poems have appeared in New England Review, American Poetry Review, JAMA, Waxwing, Split This Rock, Scoundrel Time, & many others. She is the recipient of fellowships from MacDowell (2012), Millay Arts (2012), and Virginia Center for the Creative Arts (2023). She has been honored with a Caregivers Merit Award from GrubStreet Center for Creative Writing (2020), a Mellon Fellowship in the Humanities (1987) & several Pushcart Prize nominations. Her opinion writing has been featured in The Washington Post, CNN Digital & AmericaBlog.com. Jeneva is a graduate of Middlebury College. She holds an MFA in poetry from Warren Wilson & a PhD in English Renaissance literature from Columbia University.
Photo: Harold Korn
Rob & I were featured in this Rare Disease Day story on WMAR, Baltimore: “Maryland Doctors: Be Aware of Rare Diseases.”
