We continue our Emerging Researchers series with an interview with Robin Powers, a student just starting her master’s degree work. 

Robin is an enigma. She has a wealth of energy and a very fast-moving mind. She has dreams and aspirations that will change the world.  Yet she has yet to find the right experiences and coaches to refine her approach. She most certainly has not come from a place of privilege.

Robin is a patient who has been managing and advocating for her own Ehlers-Danlos Syndrome for 17 years now, including identifying the issue and securing the genetic testing required to confirm the diagnosis. She has presented at conferences, been a PCORI Ambassador, and volunteered with other rare disease organizations.  She has done all this independently without the luxury of programs or an organization paving the way.

Robin talks about how she came to Buffalo State College and designed her own degree program, Biochemical Pharmacology of Rare Diseases. She also discusses her work to earn a degree in patient advocacy and public policy. 

The goal of our Emerging Researchers series is to highlight people like Robin who are full of potential but lacking the experience our other guests may have. These younger people have fresh ideas and the freedom to be bold. For Robin, her life depends on it.  

 

3 Comments

  1. Jessica on January 14, 2021 at 3:17 pm

    This was a great episode! What a great podcast! Highly recommend the listen!

    • Robin Alexix Powers on January 15, 2021 at 7:05 pm

      Thank you for listening jessica, to think you actually talked me into enrolling into college! Then watched me bloom as I was suppressed for like 28 years.

  2. Robin Alexix Powers on January 15, 2021 at 11:20 am

    You recaptured my heart and soul in this. You are truly brilliant at what you do. You choose to see people for who they are and you showcase that to the world. The pain, which comes with the rain and the things I score as I sore to heights no one thought I would ever reach. To think this is just the start and I am so honored that choose to be a part. A stakeholder in my future.

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