From Researcher to Patient Advocate

Sue Dubman: From Researcher to Patient Advocate

06.30.14 | By Preet Bilinski

PhRMA’s 2014 Medicines in Development for Parkinson’s Disease report highlighted the nearly 40 medicines in the pipeline that offer hope for the up to 1.5 million Americans affected by Parkinson’s disease (PD). Today we highlight Sue Dubman, one of those individuals living with PD and her inspirational story.

Sue has more than 20 years of professional experience in health care and the life sciences field having worked for industry at Sanofi; government at the National Cancer Institute, and academia with her current position at The University of California, San Francisco Medical Center. She was diagnosed with Parkinson’s in 2009 and had to switch roles from a researcher to a patient.  However, it didn’t take long before Sue attacked her diagnosis with the same zeal she had professional challenges and became a patient advocate. She found a clinical trial to participate in through the Fox Trial Finder and became involved with a number of Parkinson organizations, driven to make a difference for the Parkinson’s community.


Below are thoughts from some of those organizations regarding Sue and other patient advocates like her.

“We are so grateful to people like Sue Dubman who help us communicate the need for clinical research volunteers. We’ve built tools such as Fox Trial Finder to help patients connect with studies, but an unrivaled asset in this effort is people who live with Parkinson’s talking about their own experiences and the value research participation brings to their own lives and to the Parkinson’s community.”

          - Lily Cappelletti, Associate Director of Research Partnerships of The Michael J. Fox Foundation for Parkinson’s Research

"Sue Dubman is an inspirational leader that is impacting multiple precompetitive and advocacy initiatives for Parkinson’s disease. Her extensive knowledge and expertise in drug development and informatics is impactful during the era of big data yet her strength is conveying the sense of urgency and critical importance of collaborations to enable a path for effective treatments to improve the lives of those living with PD. She has catalyzed our progress in CAMD since she has become engaged as a member while at Sanofi and now in her role at UCSF. We are lucky to have Sue as our champion and inspiration."

          - Diane Stephenson, Executive Director ofCritical Path’s Coalition Against Major Diseases

"Sue Dubman is an exceptional grassroots volunteer for the Parkinson's community. Her years of experience within the research field and her personal story give her excellent insight in educating Members of Congress and other policymakers on issues that are important to the Parkinson's community in the areas of federally funded research, Parkinson’s disease data, and access to care."

          -Amy Comstock Rick, CEO of Parkinson Action Network

"When  Sue Dubman first attended training for PDF's Parkinson's Advocates in Research (PAIR) program, it was clear that she would set an extremely high bar for our network of 230 Research Advocates. Since then, she has shown how a person with Parkinson's can leverage their knowledge of the disease and professional skills to bring the much needed "patient perspective" to research.  Her work exemplifies the very premise of our program -- that when the two groups with the most expertise in PD come together -- scientists and people living with the disease –  they have the power to bring about better therapies at a faster pace."

          -Veronica Todaro, MPH, Vice President, National Programs, Parkinson's Disease Foundation

In closing I leave you with a few words from Sue, “As a patient of a disease that currently only has treatments for the symptoms and nothing for slowing or stopping progression, there is no time to waste. Get involved, do what you can.”

  • Sherif Ali: There is the railway. And that is the desert. From here until we reach the other side, no water but what we carry with us. For the camels, no water at all. If the camels die, we die. And in twenty days they will start to die.
  • T. E. Lawrence: There's no time to waste, then, is there?

          −     from Lawrence of Arabia


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