The Interconnectedness of Neurodegenerative Diseases: A Call to Action
At the recent Cures Collective meeting in Washington, D.C., an emotionally charged and intellectually stimulating panel convened to explore the interconnectedness of neurodegenerative diseases. Moderated by Dr. Peggy Pooz-Ogan, the session united leading voices from research, philanthropy, and lived experience to challenge conventional scientific silos and reimagine the future of brain health.
Dr. Pooz-Ogan, speaking through the lens of personal experience—her husband Jim, a pediatrician, died from ALS in 2024—reminded the audience that neurodegenerative diseases touch all ages and communities. “This is about understanding how diseases like trees in a forest are interconnected. And like trees, when they're connected, they're harder to kill,” she said.
Introducing the Panel
The panel featured three distinguished speakers:
Dr. Ray Dorsey, Director of the Center for the Brain and the Environment at Atria Health, co-author of Ending Parkinson’s Disease and the forthcoming The Parkinson’s Plan, emphasized the preventable nature of many brain diseases and challenged the audience to demand more urgency in research and policy.
Dr. Jinsy Andrews, Associate Professor of Neurology and Director of Neuromuscular Clinical Trials, discussed the historic misclassification of ALS as a purely muscular disease and how recent findings—including overlaps with Parkinson’s and dementia—point to shared pathological mechanisms like neuroinflammation, mitochondrial dysfunction, and protein aggregation.
Aggie McMahon-Stevens, Associate Director at the Milken Institute’s SPARC Team, focused on the structural and funding barriers that reinforce disease silos in research. She stressed the need for philanthropic and public funders to incentivize cross-disease collaboration.
Shared Mechanisms, Shared Barriers
One of the session’s core messages was that the biological underpinnings of ALS, Parkinson’s, Alzheimer’s, and related disorders—such as neuroinflammation, protein misfolding, and mitochondrial damage—often overlap. Yet, clinical trials, funding, and even professional medical training tend to reinforce artificial boundaries between diseases.
Dr. Andrews pointed out that while ALS and frontotemporal dementia (FTD) share genetic and pathological traits, trials are rarely designed to span these conditions due to operational challenges and structural silos. “We need to reframe the way we think about these diseases,” she said.
McMahon-Stevens highlighted promising models like the 10K Brains Project, which applies AI to human-derived data across multiple diseases. “By focusing on mechanisms instead of disease labels, we get closer to precision medicine that actually serves patients.”
A Cautionary Tale from Guam
Dr. Dorsey shared a compelling historical case from Guam where indigenous populations exposed to poorly washed cycad seeds—a known neurotoxin—developed ALS, Parkinson’s, and dementia at rates 50 to 100 times higher than average. This case, he said, illustrates that these diseases can share a common environmental origin. “The toxin, BMAA, damages mitochondria—like many other environmental triggers—and the diseases it caused took years or even decades to develop.”
He urged the audience to look beyond genetics, which dominate current research funding, and focus more on environmental causes. “We spend two cents of every Parkinson’s research dollar trying to prevent the disease,” Dorsey said. “That’s unconscionable.”
Prevention is Possible
The panel repeatedly emphasized prevention as the most underfunded, under-discussed, and yet economically sensible approach. From banning pesticides like paraquat—linked to Parkinson’s—to educating the public on modifiable risk factors such as exercise, air pollution, and diet, the speakers agreed: these diseases don’t have to be inevitable.
Dr. Andrews added, “We need registries, we need funding, and we need to bring in researchers beyond the usual suspects. Prevention is only possible if we understand epidemiology and environmental risk.”
A System Ready for Reform
Discussion turned to how collaboration actually happens—or fails to. McMahon-Stevens pointed out that labs and grant structures still reward researchers for staying within narrow disease definitions. “They’re not resisting cross-disease research out of spite. The system just isn’t built for it,” she said.
Dr. Dorsey challenged scientists and funders to rethink their priorities: “Researchers are trained to seek knowledge, not cures. That’s why funders—you—must hold them accountable.”
Panelists proposed federal initiatives, shared data portals, cross-disease research incentives, and even structural changes in clinics to foster interdisciplinary collaboration. Examples included clinics consolidating specialists from ALS, Parkinson’s, and dementia under one roof to improve both care and collaboration.
Activism as a Catalyst
Perhaps the most galvanizing moments came when the conversation turned to advocacy. Dr. Dorsey invoked the spirit of ACT UP, the March of Dimes, and Mothers Against Drunk Driving to urge the community to demand change.
“We’ve been too polite, too quiet for too long,” he said. “ALS is terrible. Huntington’s is terrible. Parkinson’s is terrible. And it’s unacceptable that we aren’t doing more.”
Looking Ahead
The panel closed by envisioning a future where interdisciplinary care models, early diagnostics, shared biomarkers, and community-driven prevention strategies are the norm.
“We must amplify the voices of those affected,” said Dr. Pooz-Ogan in her closing remarks. “Caregivers and people living with neurodegenerative diseases are exhausted, but when that exhaustion is overcome, there is no force more powerful.”
As attendees filed out for lunch, the buzz in the room wasn’t just about the food—it was about the sense of purpose. The panel had laid a challenge at the feet of scientists, funders, and advocates alike: to break the silos, rethink the science, and—most importantly—spark a revolution.
