November 25, 2020

The Niche

Knoepfler lab stem cell blog

The model of a patient advocate: what are the key elements of success?

I deal with many patient advocates and that is one of my favorite parts of my job. They are wonderful! However some go above and beyond the call of duty and are model advocates in my opinion. Others do some great things, but also some negative things such as attacking the FDA publicly, which serves no practical purpose.

Roman Reed won my blog’s Stem Cell Person of the Year Award for many reasons, some of which I outlined this week, but a big one is that he is the complete package of a patient advocate. How so?

Knoepfler and Roman ReedThere is a reason Roman is a mentor and role model to so many other patient advocates, who can learn from Roman’s example in some key areas:

  • He does his homework and knows the science (see us talking about some unpublished preclinical data from my lab above).
  • He focuses on the positive rather than the negative.
  • He makes real, tangible things happen such as laws.
  • He knows the importance of funding as the fuel for making stem cell medicine a reality.
  • He is a uniter and not a divider, building bridges between all kinds of folks who might normally be separated: scientists, advocates, politicians, lawyers, patients, funding agency folks, etc.
  • He empowers others.

I consider myself sort of a junior patient advocate being relatively new in the area just for a few years and I find myself learning from Roman all the time.

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