Uploaded July 2026 | Updated September 2026, 2 weeks ago
Welcome to a new session of Citizen Research with Dr. Terry Heiman-Patterson and Dr. Lyle Ostrow.
In this session, we explore an important idea at the heart of EverythingALS Citizen Research:
You don’t have to be a scientist to think critically about research.
We are joined by Dr. Terry Heiman-Patterson, MD - Director of the MDA ALS Center of Hope and Director of Neurodegenerative Disorders at Temple University - alongside Dr. Lyle Ostrow, neurologist, researcher, and Director of the Neuromuscular Pathology Lab at Temple University, for a thoughtful discussion on how patients, caregivers, and the broader ALS community can better understand and evaluate scientific information.
As ALS research continues to evolve rapidly, new studies, therapies, and headlines emerge almost daily. This session is designed to help the community navigate that information with greater clarity, confidence, and critical thinking.
In this talk, we cover:
• Intranasal Exosome & Secretome Therapy for ALS
• Two studies from the same research group, appraised in turn
• Paper 1: A multi-disease study involving ALS, Kennedy disease, CMS, and Lewy body dementia (n = 18)
• Paper 2: An ALS-only follow-up study (n = 70)
• The rationale, methods, and findings presented in each paper
• How these studies compare against the ALSUntangled "Ten Red Flags" framework
• A closer look at the Prodromos Clinic website and the claims presented there
Citizen Research is about making science more accessible, collaborative, and empowering for everyone affected by ALS. Conversations like this help bridge the gap between complex research and real-world understanding — ensuring that the ALS community remains informed, engaged, and connected.
📲 Download the EverythingALS App
• Google Play: bit.ly/4nXqIYy
• App Store: bit.ly/42tPBmh
Follow EverythingALS:
► Website: everythingals.org
► X: https://x.com/everything_als
► LinkedIn: linkedin.com/company/everythingals
► Facebook: facebook.com/everythingals
► Subscribe for more Expert Talks: youtube.com/@EverythingALS
#EverythingALS #CitizenResearch #ALSResearch #ALSCommunity #ClinicalTrials #ALSScience #NeurodegenerativeDisease #ResearchLiteracy #CriticalThinking #ALSAwareness #ExpertTalk
🔔 If you are passionate about advancing ALS research and understanding, like, subscribe, and turn on notifications.
Sharing this episode helps expand awareness and keep important scientific conversations moving forward.
Welcome to a new session of Citizen Research with Dr. Terry Heiman-Patterson and Dr. Lyle Ostrow.
In this session, we explore an important idea at the heart of EverythingALS Citizen Research:
You don’t have to be a scientist to think critically about research.
We are joined by Dr. Terry Heiman-Patterson, MD - Director of the MDA ALS Center of Hope and Director of Neurodegenerative Disorders at Temple University - alongside Dr. Lyle Ostrow, neurologist, researcher, and Director of the Neuromuscular Pathology Lab at Temple University, for a thoughtful discussion on how patients, caregivers, and the broader ALS community can better understand and evaluate scientific information.
As ALS research continues to evolve rapidly, new studies, therapies, and headlines emerge almost daily. This session is designed to help the community navigate that information with greater clarity, confidence, and critical thinking.
In this talk, we cover:
• Intranasal Exosome & Secretome Therapy for ALS
• Two studies from the same research group, appraised in turn
• Paper 1: A multi-disease study involving ALS, Kennedy disease, CMS, and Lewy body dementia (n = 18)
• Paper 2: An ALS-only follow-up study (n = 70)
• The rationale, methods, and findings presented in each paper
• How these studies compare against the ALSUntangled "Ten Red Flags" framework
• A closer look at the Prodromos Clinic website and the claims presented there
Citizen Research is about making science more accessible, collaborative, and empowering for everyone affected by ALS. Conversations like this help bridge the gap between complex research and real-world understanding — ensuring that the ALS community remains informed, engaged, and connected.
📲 Download the EverythingALS App
• Google Play: bit.ly/4nXqIYy
• App Store: bit.ly/42tPBmh
Follow EverythingALS:
► Website: everythingals.org
► X: https://x.com/everything_als
► LinkedIn: linkedin.com/company/everythingals
► Facebook: facebook.com/everythingals
► Subscribe for more Expert Talks: youtube.com/@EverythingALS
#EverythingALS #CitizenResearch #ALSResearch #ALSCommunity #ClinicalTrials #ALSScience #NeurodegenerativeDisease #ResearchLiteracy #CriticalThinking #ALSAwareness #ExpertTalk
🔔 If you are passionate about advancing ALS research and understanding, like, subscribe, and turn on notifications.
Sharing this episode helps expand awareness and keep important scientific conversations moving forward.
