The Superficial Siderosis Research Alliance and Patient Registry is a global patient, caregiver, and volunteer-led effort designed to connect our community members from every corner of the world.
Amplifying the Patient Voice
Read our new Patient Registry report:
SSRA Regional Directors
Kelly
Morgan
Illinois
Kelly is an SSRA board mmber, our grant administrator, research program assistant, and helps patients in the Illinois area find care.
Fiona
Parkinson
Australia
Fiona Parkinson, Australian Director. She leads our Australian outreach and helps SS patients in her area connect with care.
David M.
Dickson Jr.
Colorado
David M. Dickson Jr. is our voice in Colorado. A personal fitness trainer, he specializes in patients with neurological and mobility disorders.
Marybeth
Sullivan
New York
Marybeth Sullivan is the SSRA director for New York State. She is a contributor to livingwithss.com, sharing personal insights on life with SS.
Javier
Sapuy
Hawaii
Javier Sapuy is our SSRA advocate and fundraiser in Hawaii. Javier’s diagnosis is the only identified case in Hawaii known to-date.
Rhys
Holmes
United kingdom
Rhys Holmes is the SSRA director team leader, Based in the United Kindom. He is a frequent contributor to livingwithss.com.
Jacklyn
Gravett
North Carolina
Jacklyn Gravett is the SSRA adovcate for North Carolina. as an SS patient with hearing impairment she has first hand knowledge
Sara
Dobroth
California
Sara Dobroth is the SSRA advocate for California. Sara has experience with insurance denial for chelation therapy coverage.
THE SSRA NEWSLETTER
Speeding Therapy Access Today
Bigger and Better
Superficial Siderosis Neuroprotection Study
Our Volunteers
Captain of the Month
Mike Hanamann
