(2019 Updated Edition)
When I couldn't find patient-driven information about MSA, and when my doctors didn't have a lot of information about patient experiences, I set out to create a way patients could share their experiences. In this 2019 edition, dataMSA collected information from more than 1000 persons worldwide who have been affected by MSA (patients, caregivers, loved ones to those lost). This text is an invaluable resource for health care providers, support staff members and others who seek information about multiple system atrophy.
Sections of the data were presented at the 2018 International Congress of Parkinson's Disease and Movement Disorders in Hong Kong and the 2023 American Autonomic Society Annual Meeting in San Juan, Puerto Rico.
No revenue is collected from the surveys and patients remain confidential. 100% of the profits from this book will be donated to support research for a cure.
Bill Sydnor, MSA patient/ dataMSA creator /www.dataMSA.com
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dataMSA was created by Bill Sydnor, an MSA patient. Bill has worked in health education and recognized the need for patient-driven information regarding multiple system atrophy. Working with patients and family members affected by MSA, he delevloped a set of surveys to capture their experiences, resulting in an invaluable resource for health care providers and researchers. Bill resides in south Florida.
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