Author & Advocate



  • Tax the Rich Bus Tour Press Conference, sponsored by Tax March, July 10, 2019, National Mall. Spoke on behalf of Little Lobbyists on my family's experience with health care and drug prices. 

  • Protect Our Care, U.S. Senate Press Conference, April 30, 2019, convened by Senators Chris Murphy, Bob Casey, and Doug Jones, U.S. Capitol, Washington DC. Spoke on behalf of Little Lobbyists, "Why Medicaid Matters."

  • Rare Action Network, February 28, 2019, Rare Disease Day Panel Discussion: "Caregiver Challenges," United Way of Frederick County, Frederick MD.

  • 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.