Multiple System Atrophy (MSA) is a degenerative, progressive, neurological disease so named because its signs and symptoms affect multiple systems of the body. There is no effective treatment and no cure; people typically live about seven to nine years after MSA symptoms first appear. Diagnosis of Multiple System Atrophy (MSA) is challenging because there is no Single test that can make or confirm the diagnosis. Diagnosis is done through a process of exclusion and symptom tracking. As a result, some people are never properly diagnosed, although doctors are becoming increasingly aware of the disease.

I was diagnosed with MSA in the summer of 2011.  In 2012, I began a 12-month, double-blind clinical trial to assess the viability of Rifampin (Rifampicin) as an effective means of slowing progression of the disease. 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. After the Rifampin 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). For five full years, 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.

In October 2018, the dataMSA Surveys for Multiple System Atrophy were presented at the International Congress of Parkinson’s Disease and Movement Disorders® in Hong Kong by Dr. Zoltan Mari, Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas and Dr. Abhimanyu Mahajan, Movement Disorders Fellow at University of Cincinnati. Of the 1800+ abstracts presented at the Congress our data was in the top 5 of Most Viewed. The dataMSA abstract was presented in the Movement Disorders Journal, online edition.

In November 2023, the patient-driven data from the dataMSA Surveys for Multiple System Atrophy were presented at the Annual American Autonomic Society Annual Meeting in San Juan, Puerto Rico.

Drs. Wolfgang Singer and Dr. Negin Badihian ((Mayo Clinic, Rochester MN) presented their findings and recommendations after thorough analysis of the data. Dr. Badihian received the Don Summers Memorial MSA Travel Fellowship Award for this project.

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

Bill Sydnor ─ dataMSA patient, dataMSA creator