Rare Disease Advocacy, Education, and Global Awareness
Presentations
I was selected to be James Madison University’s Keynote speaker for the April 12, 2018 Conference on Global Issues: “Courage, the most honorable of human Virtues”, which can be viewed here:
I was given the honor to attend rare disease week in Washington D.C. beginning February 23rd 2019. At this conference, I was able to be inspired by rare disease advocates and fighters from across the country to hear their stories, how they have been fighting and lobbying for change, and how their diseases affect their everyday lives. I had the opportunity to ask a question to the rare disease caucus, along with the special assistant to the Trump administration, Jane Lucas. Listen carefully at 3:05 and 4:05
