Author & Advocate

More on Robert


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