Superficial Siderosis Research Alliance Mission

To seek, raise and provide funding in support of medical research for the benefit of the world community affected by the neurodegenerative disorder superficial siderosis.
WHY AND HOW THE SSRA WAS FOUNDED

WHY AND HOW THE SSRA WAS FOUNDED

There is no greater force than the sense of urgency you experience when someone is diagnosed with Superficial Siderosis. This ultra-rare neurodegenerative disorder affects less than one in three million persons worldwide.

ABOUT US
LEND YOUR VOICE SPREAD AWARENESS

LEND YOUR VOICE SPREAD AWARENESS

Request your free Superficial Siderosis awareness wristband today. You may request up to ten 1/2" debossed silicone wristbands. Shipped from points in the United States, United Kingdom, and Austraila while supplies last.

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CAN WE ACHIEVE OUR GOAL?

CAN WE ACHIEVE OUR GOAL?

How does a small patient community move forward? Continue to visit multiple specialists in an effort to survive the effects of this disorder? Or do we tackle this problem head-on, together as a community, to empower research?

WHY DONATE?
CLINIC AND RESEARCH LAB

CLINIC AND RESEARCH LAB

The SSRA raises and distributes research funding to the newly founded Superficial Siderosis Clinic and Research Laboratory. Located at Mass General Hospital, Boston, patients may consult the clinic from anywhere in the U.S.

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2021 Grant Award Presentation

Neuroprotective Antioxidant Study

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Donation Total: $25.00

On The Horizon

2021 will see the launch of our first SSRA sponsored research study designed to explore the possibility that boosting brain urate by treatment with an antioxidant could slow the brain cell degeneration of Superficial Siderosis patients. This project might substantially shorten the time needed to develop a full neuroprotection trial. Optimizing this first study’s crucial characteristics should considerably enhance the likelihood of future therapies.

Our Coder Search Begins

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Measuring The Iron When a Two-year observational study on the efficacy of deferiprone1 was released, one finding stood out. Physicians…
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Our Volunteers

Captain of the Month

Mike Hanamann

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Auction Co-chairs Deb Zindler and Sue Dempsy
president and treasurer
Kyle Dempsey and Lloyd Gleisner

Together for a Cure

Grant Funding

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Donation Total: $100.00

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WHAT DEFINES A RARE DISORDER?

In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people in the US. There are over 7,000 identified rare diseases and disorders.Superficial Siderosis is classified as an ultra-rare disorder with less than 300 cases identified in the U.S. and a yet to be determined number worldwide.
SUPERFICIAL SIDEROSIS RESEARCH ALLIANCE© 2021 - All rights reserved Federal Tax ID: 84-2515094
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