Author & Advocate



  • Rockville City Council, February 26, 2018, “Robert & Rare Disease,” remarks after accepting the council’s Rare Disease Proclamation on behalf of the National Organization for Rare Disorders (NORD), Rockville, MD.

  • 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.