How Lundbeck brought together advocates from across the Parkinson’s disease and multiple system atrophy (MSA) communities to collaborate on meeting the needs of people affected by neurogenic orthostatic hypotension (nOH), a nervous system condition that can occur in people with Parkinson’s and MSA.
Lucy Northcliffe-Kaufmann, PhD, is a professor of neurology at NYU Langone Health in New York City. Tennessee resident MaryGail Anderson is a care partner to her father, who lives with Parkinson’s disease and nOH. Carol Langer of Massachusetts, who lost her husband to MSA, is a board member of the MSA Coalition, a patient advocacy organization. The three share a passion for improving the lives of people impacted by neurodegenerative disorders, but the chance of them ever meeting was slim—until Lundbeck invited them, along with representatives of the Parkinson’s Foundation, American Parkinson’s Disease Association and Davis Phinney Foundation, to come together in a unique cross-sector working group to advance support for people affected by nOH.
Launched in 2015, the nOH Advocacy Working Group meets regularly to share insights around the burden of living with nOH and to identify areas of need for educational resources. “There are so many perspectives from all of these different people, and when we bring them together and understand each other’s issues, we work much more effectively as a whole,” Langer says.
The Advocacy Working Group has deepened members’ understanding of the needs of the nOH community and fostered collaboration amongst the patient organizations. Because these organizations sometimes overlap in their outreach to patients and care partners, coordination is important, and the Advocacy Working Group helps each organization be as targeted and effective as possible, explains Robin Kornhaber, senior vice president of the American Parkinson Disease Association. “I feel that by working collaboratively we’re not repeating our efforts and we’re all working to our strengths,” she explains. “And in this way, we can have a greater impact for the Parkinson’s community.”
In this video, working group members, including Lundbeck’s Charise Dunn, senior manager of patient advocacy, explain how the group works together to advance the shared goal of supporting people affected by nOH.