After receiving a working-diagnosis of Multiple System Atrophy, at age 54, I began blogging about my M.S.A. experiences on my Facebook page, "Living Day by Day With MSA" to gather and share experiences with others. In 2011, I became one of 100 individuals accepted into the NIH Study of Rifampicin in Multiple System Atrophy.  When the study concluded in fall 2012, I began to wonder how we patients and study participants might share our voices with one another, and with the service provider and medical community.

I set about gathering the input and concerns of other individuals affected by M.S.A. (patients, caregivers, loved ones of those lost), through social media platforms, and began to develop a survey to quantify our collective experiences. I had gained experience in survey design during my work with the C.D.C. Division of Adolescent and School Health prior to my diagnosis. Several drafts of the M.S.A. survey were developed, reviewed, adjusted, and edited over a period of several months. I learned to utilize Google Drive to format and load the surveys, store and resource the data, and develop reports.

In early Fall 2013, I sent a draft of the M.S.A. survey to Mayo Clinic/Jacksonville - Department of Neurology, for their review and feedback. The resulting comments were very positive, and the recommendations were inputted. A final draft of the data*MSA Survey for Multiple System Atrophy was completed and prepared for proofing by January 2014.

In late March 2014, I launched dataMSA in recognition of M.S.A. 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 M.S.A. I was guided by the mission that no revenue would be generated by dataMSA and that all respondents would remain confidential. Personal identifying information was not collected; participants utilized a specific email address held in confidence.

From 2014-2019, by utilizing Internet social media platforms and email, dataMSA was able to collect data and information from more than 1100 individuals from across the globe who were living with Multiple System Atrophy (MSA), and from caregivers and loved ones of those lost to MSA. During these five years of implementation, I created monthly updated data reports, available to all participants on the dataMSA website. The data was made available at no cost to groups, agencies, and medical personnel providing treatment, education and research for M.S.A. I was able to share the dataMSA link with professionals in many of the largest neurological research centers worldwide.

My ultimate goal with dataMSA was to provide researchers with the raw data, with the potential of uncovering trends and patterns within the survey responses, e.g., risk factors, gender-specific issues, progression, so forth. 

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

Bill Sydnor ─

dataMSA creator/MSA patient