Soon after my MSA diagnosis, I began blogging about my MSA experiences on my Facebook page, "Living Day by Day With MSA" and soon gathered wonderful friends who shared their experiences, as well. I was accepted into the clinical trial for Rifampin/Rifampicin on 2011. After the  trial ended, with negative results, I began to wonder how we patients might share our voices with one another and with the service provider and medical community.

With the input of other individuals affected by MSA (patients, caregivers, loved ones of those lost), I began to develop a survey to assess our collective experiences. Several drafts of the survey were developed, reviewed, adjusted, and edited over a period of months.

In early Fall 2013, I sent a draft of the survey to the Mayo Clinic Jacksonville - Department Of Neurology, for review and feedback. The final draft of the data*MSASurvey for Multiple System Atrophy was completed in January 2014.



In late March 2014, I launched dataMSA in recognition of MSA Awareness Month (March). The survey was open to all who may have been affected by the disease - patients, caregivers, and loved ones speaking for those lost to MSA. I was guided by the mission that no revenue would be generated by dataMSA and that all respondents would remain confidential. 

The primary goal of dataMSA is to provide research centers access to the raw data  to seek possible trends and patterns within the responses, e.g., risk factors, gender-specific issues, so forth. The dataMSA reports have been reviewed by the Parkinson's Disease and Movement Disorders and neurological researchers across the globe.

With deep gratitude to all who have participated, many of whom are no longer with us,

Bill Sydnor ─

dataMSA creator/MSA patient 

To learn more, please contact dataMSA.com 

or visit Facebook: LivingDayByDayWithMSA