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- Research
FDA Grant Application to Advance Superficial Siderosis Research
A MAJOR MILESTONE FROM THE SSRA MEDICAL AND SCIENTIFIC ADVISORY COMMITTEE Pushing the Boundaries of Rare Disease Research This month…
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NORD Living Rare Study
The Superficial Siderosis Research Alliance is a member of the National Organization of Rare Disorders (NORD). The mission of NORD…
Read More » - Hearing
Best Hearing Aids for 2025
Hearing Aids for Sensorineural Hearing Loss A few weeks ago, we received an email asking for advice on which hearing…
Read More » - Personal Stories
Both a Lover of Music and a Passionate OT, Whose Struggles With SS Have Had a Significant Impact: This is Tim McPherson’s Story
It all started on Groundhog Day in 1977. It was my first year attending university in Michigan, my home state.…
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Living Your Best Life
- Best Life
The Cochlear Implant Journey – A Year On
Background It would be an understatement to say it has been life changing for me to have a perception of sound again, however, it is totally different from having naturally hearing (and no, I don’t…
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Patient Stories
- Personal Stories
Inescapable Realities
Superficial siderosis progresses slowly during the early years. This may be an unintended blessing considering the years many will spend…
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It’s OK not to be OK
It was RUOK day, but I was not OK. Yesterday was RUOK day, but I wasn’t. If I had been…
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Running on Empty
Superficial siderosis can be excruciatingly draining on everyone it touches. Sometimes it feels like we’re running on empty. It’s been…
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What the SSRA Means to Me
Nowhere to Go When I was first diagnosed with superficial siderosis (SS), there wasn’t much information around. It was a…
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Remembering What it is Like to Get Out
Getting Out Again I was really looking forward to meeting my friends for the first time in 14 months; however,…
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Living In Upside Down World
I thought we were ready. Very early in March, I had a conversation with two neurologists in Italy. They had…
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