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 Michael Greenbaum, Arizona State Director.
“If you don’t do your best to get your government to help you, you haven’t spoken up,” says Michael Greenbaum, a PAN advocate for two years.
As the recently named Arizona State Director, Michael believes strongly that he has to get more people engaged in the advocacy process in order to make progress toward better treatments and a cure for Parkinson’s disease.
Michael also serves 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.
Shortly after being diagnosed with Parkinson’s in 2009, Michael said that he realized that the private sector, including the drug companies, were not going to find treatments and a cure for Parkinson’s alone. Once he learned more about the importance of federal research funding, he knew he had to get more involved.
He said his first PAN Forum in 2013 really opened his eyes to the potential the Parkinson’s community had to make real change. He said seeing the impressive work of the postdoctoral students working on Parkinson’s research and hearing first-hand from Story Landis, Ph.D., the director of the National Institute of Neurological Disorders and Stroke, energized him to get more involved.
“I thought, ‘wow this is a power player who I will never see again,’ and that kept me going,” he said of his experience hearing Dr. Landis speak.
As someone who did do policy work through his professional career, Michael said advocacy may have come a little easier to him than most people and he does encounter some skepticism from people about the power of their voice. He said he often points to PAN’s success with the Department of Veterans Affairs (VA) as an example of how advocacy works.
“I have lived through that war,” Michael said referring to the Vietnam War. “Knowing how many people came home damaged in so many ways, I thought that was a real victory.”
He is referring to the VA recognition in 2010 of Parkinson’s disease as associated with exposure to Agent Orange or other herbicides during military service in Vietnam. Veterans diagnosed with Parkinson’s disease who served in-country or on the inland waterways of Vietnam between January 9, 1962 and May 7, 1975 are presumed exposed to Agent Orange or other herbicides.
Michael says his best advice for others who think advocacy is daunting is to contact PAN or their state director directly. He said that being an educational resource for your Member of Congress was extremely valuable, and that every single person’s personal story is helpful in the fight against Parkinson’s disease. In fact, when he first met with Congresswoman Kyrsten Sinema (D-AZ), it was his personal story that got him a foot in the door.
“I asked her, ‘do you know how much I spend or how many drugs I take?’ and then I took out my pills and showed her all 18 pills and told her that my out of pocket cost was about $4,000 a year,” Michael said.
Michael said that once Congresswoman Sinema understood his personal story, she then understood why changes in policy were so important.
From L to R: Arizona State Director Michael Greenbaum, Senator Jeff Flake (R-AZ),
and Postdoctoral Researcher Brittany Duggar.
To contact Michael or other PAN advocates, visit PAN in Your State.