Rob Stone: Artist, Poet & Advocate
Rob Stone is a 2018 Walt Whitman High School graduate. After leaving high school, Rob wanted to be a health care and disability rights advocate, so he began advocating with Little Lobbyists in 2019. Rob has been part of Capitol Hill press conferences and met with U.S. Senate and House congresspersons and staff. He also works with the Self-Directed Advocacy Network and other groups on state issues, and has testified before the Maryland General Assembly. He is a 2020 graduate of The Arc’s Partners in Policymaking program. He also takes classes at Montgomery College. Rob enjoys writing poetry, composing music, and making art. You can learn more about his work here. He lives in Bethesda, Maryland, with his mom and dad, his brother Castin, his dog and two cats.
Below are galleries of Rob’s artwork and his poetry.
You can purchase framed prints of his art, as well as his artwork on home decor items,
notebooks, phone cases & much more at his official art website.
Rob’s First Poetry Reading
Rob composes poetry using several methods. His Tobii-Dynavox EyeMobile communicator is a tablet with special software that tracks his eye movements, so he can select words and phrases. Rob also uses a color-coded spinner (that is switch-activated) to select words from a Paint Chip Poetry game, or he uses a word game called Haikubes.
Leading a Self-Directed Life
Rob is one of the stars of this video by the Self-Directed Advocacy Network, “Self-Direction and the Good Life.” Rob uses self-directed services through a Maryland Medicaid waiver to manage his life as an adult with disabilities. Self-direction gives him control over his life, including hiring his own aides and choosing his own activities. Learn more about self-direction by watching the video.
ON ROB’S RARE DISEASE: INTERVIEWS & PRESENTATIONS
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
“Counting on the generosity of the crowd: Startups use crowd-funding to aid patients, nonprofits,” by Gus G. Sentementes, The Baltimore Sun, November 13, 2011