Periodically PAN highlights one of our tireless volunteer advocates. PAN thanks all our advocates for your commitment and contributions to the Parkinson’s community. This week we are highlighting Sue Dubman, Massachusetts Assistant State Director and recipient of the 2014 Murray Charters Award for Outstanding Service to the Parkinson’s Community.
The Murray Charters Award was created in 2004 and recognizes an advocate who not only engages the community, but also raises awareness of Parkinson’s disease through media and other communications outreach tools. The late Murray Charters of Vancouver, B.C. was the first to receive the award. Sue will be presented this award at the 2014 Leadership Forum on February 24 in Washington, DC.
Sue Dubman has had a long career in science so when she received a Parkinson’s diagnosis in 2009, she said it was a shock to see her life’s work from another perspective.
“I was in denial for at least a few years and pretty much hid it from everyone else,” Sue said. “But it comes a point where you can’t hide it anymore.”
That’s when Sue said she decided to take her long career in science and her recent Parkinson’s diagnosis and get more involved as a patient advocate. Her background knowledge in how the Food and Drug Administration (FDA) and National Institutes of Health work with patient advocates led her to learn more about the Parkinson’s Action Network (PAN). But her drive to make a difference for the Parkinson’s community was her true passion, she said.
Currently Senior Director, Sanofi R&D, Sue is spearheading global implementation of data standards, governance, and semantic services. Prior to Sanofi, Sue served as director, National Cancer Institute Informatics Initiatives, and VP and CIO at two biopharmaceutical companies.
“We need a global view of standards and data sharing and how we’re going to make that happen,” Sue said. “I do work closely with the FDA and we are working on standards for Parkinson’s.”
Sue also sits on PAN’s Grassroots Advisory Board, a group of 10 grassroots leaders who participate in various aspects of PAN’s decision making and provide critical feedback about the evolving needs of the Parkinson’s community.
Through this work, Sue said she knows how important it is to listen to patient advocacy groups when coming up with standards of getting drugs to market faster. She also said that people sometimes don’t realize how important patients are to companies working to develop new treatments and that they do want to hear from people affected by disease.
“The pharmaceutical industry is fairly responsive to patients,” she said. “They want to constantly improve on their reputation and most people who work in pharma are there because they want to make a difference.”
From L to R: Rep. Chris Van Hollen (D-MD), Sue Dubman and her husband, Joe, at the
Alliance for Regenerative Medicine Annual Dinner in May 2013.
She encouraged people to get involved in organizations like PAN to learn how they can learn more about the disease, all the aspects of how drugs and treatments are created, and how their voice can make an impact. She also encouraged people to not get intimidated and that they did not have to have a science background to make an impact on the future of Parkinson’s disease.
“People need to be supportive of researchers and people working in health care if they want any new treatments to come out any time soon,” Sue said.
Even without a cure, Sue says there is so much room for improvement for people with Parkinson’s disease. In a recent news article  about her work in the Parkinson’s community and her speaking engagement at the World Parkinson’s Congress, Sue explained what motivates her.
“Instead of hearing from your doctor that ‘you have a terrible, progressive disease and there is no way to stop it or reverse it,’ my hope is that in the future, the doctor will say, ‘You have a terrible disease but don’t worry, we have something to slow it, stop it or reverse it.’ That is enough for me to do what I do.”
To contact Sue or other PAN advocates, visit www.ParkinsonsAction.org/your-voice/pan-your-state .
Date originally posted: February 14, 2014.