I was diagnosed with MSA in July 2010 and began blogging about my experiences on my Facebook page, "Living Day by Day With MSA". I soon gathered wonderful friends who shared their experiences, as well. I wondered how we patients could share our voices with one another and with the service provider and medical community. In 2014, I created and launched dataMSA,com, with MSA surveys 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. More than 500 folks from across the globe have participated.
St Augustine, FL
Bill initiated collection of patient-driven data about Multiple System Atrophy which he shares readily with numerous researchers and healthcare providers, greatly advancing their understanding of this rare disease. Bill is also active on facebook sharing day to day advice, humor and empathy with followers who look to him for inspiration and hope. — Pam
I’m a Patient Leader