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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
- Physical Therapy and Exercise
Retrain Your Brain with Vestibular Therapy
Vestibular therapy exercises are designed to improve the vestibular system's function by challenging and retraining the brain to process information from the inner ear.
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Patient Stories
- Personal Stories
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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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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When Neurology Has No Answers: My Journey Through the Maze of Superficial Siderosis
A Nostalgic Look Back: Celebrating Success Stories for SS Month We’re taking a moment during Superficial Siderosis Month to revisit…
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My Last Music Festival
Download Festival Prior to 2017 I was a very outgoing person and had attended Download Festival nearly every year since…
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Intervention at Only 23: What May Sound Scary Is a Blessing in Disguise
There aren’t really words to truly describe what it’s like going into brain surgery. I remember seeing a row of…
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Camping with a Chronic Illness
No, I’m sorry, we can’t. It’s become our standard answer to most invitations now. Our niece sent a text last…
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