Columbia University is hosting their first Multiple System Atrophy (MSA) Symposium on Wednesday, September 30, 7am to 12:20pm PT. This free, virtual event for patients, caregivers, and health professionals. Registration ends earlier in the morning on September 30th.
Category Archives: MSA
Lewy body – confusing terminology!
We’ve helped over 1,500 families donate a loved one’s brain, so we have read many neuropathology reports. About half the time, people diagnosed clinically with multiple system atrophy (MSA) end up with a brain donation report that says the person had “Lewy body disease.” And, some of the time, people diagnosed clinically with Lewy body dementia (LBD) end up with a brain donation report that says the person had “Lewy body disease.” Same thing for people diagnosed clinically with Dementia with Lewy bodies. And, a lot of the time, people diagnosed clinically with Parkinson’s disease (PD) end up with a brain donation report that says the person had “Lewy body disease.”
Oh, the terminology is confusing! I wish neuropathologists would use language that we laypeople can understand.
“Stridor & Struggles: Sleep in MSA” Mayo Podcast
Source: gpointstudio
In May 2026, the Mayo Clinic published a 22-minute video for healthcare professionals titled “Stridor and Struggles: Sleep in Multiple System Atrophy (MSA). The focus is on stridor, which the co-hosts describe as a sleep symptom specific to MSA. Stridor occurs in about 40 percent of those with MSA, and is generally a “strangling” sound heard upon inspiration. The co-hosts encourage families to make recordings during sleep and bring these recordings into the clinic for the neurologist or sleep specialist to hear. For me, the two most interesting sections were on the mechanisms of stridor (timestamp 7:17) and when to consider a tracheostomy (11:05).
ElevenLabs Expands Voice Cloning Support with Mission MSA Partnership
Through their Impact Program, ElevenLabs has partnered with Mission MSA to offer complimentary subscriptions to people diagnosed with Multiple System Atrophy (MSA). These free subscriptions provide access to Professional Voice Cloning technology, allowing users to create a realistic model of their own voice for converting text into speech.
Atypical Parkinsonian Disorders Outreach, Access, and Education Webinar – May 30
Our friends, Drs. Jocelyn Jiao and Niyatee Samudra from the CurePSP Center of Care at Stanford University, along with UCSF, and Cedars-Sinai (Los Angeles) are offering a free, two-hour, virtual webinar on Saturday, May 30th, 10am-noon PT, on advances in the care of people living with Atypical Parkinsonian Disorders (APD’s): progressive supranuclear palsy, corticobasal syndrome/degeneration, and multiple system atrophy.
This educational event is designed for physicians and other healthcare professionals, who will receive continuing medical education credit.
Good news – we in the lay community may join! Please share the word with your healthcare team, especially if you see a general neurologist or primary care physician. You might even share the webinar registration link with your physical therapist, speech therapist, or fitness trainer.