Living With Superficial Siderosis | Digital Magazine of the SSRA

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Live Event
Rori Daniel8 hours ago
2 75
Ask the Experts: Superficial Siderosis Q&A Panel
A Rare Opportunity to Ask Questions About Superficial Siderosis in Real Time If you’ve ever wanted to ask a leading…
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Perspective
Rori Daniel3 weeks ago
0 176
Superficial Siderosis Care
Accessing Specialist Care in the United Kingdom There are significant differences between the United Kingdom and the United States in…
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Treatment Options
Rori Daniel4 weeks ago
1 299
CT Myelography in Superficial Siderosis
Advancements in Detecting Dural Leaks In superficial siderosis, a common cause of bleeding is a defect or tear in the…
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Personal Stories
Rori DanielMarch 30, 2025
0 417
Finding Harmony Through Challenge: Mikko Pettinen’s Story
A Life Shaped by Music In the heart of Helsinki, where jazz fills the air and creativity thrives, trumpeter and…
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Living Your Best Life

Physical Therapy and Exercise
Rori DanielJanuary 26, 2023
2 484
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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July 7, 2024
The Cochlear Implant Journey – A Year On
October 12, 2021
Exercises for Balance and Mobility
September 2, 2021
Finding The Right Healthy Diet
September 3, 2021
Chair Yoga for Mobility and Balance

Patient Stories

Personal Stories
Fiona ParkinsonSeptember 9, 2022
1 128
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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Personal Stories
Rori DanielDecember 12, 2019
6 359
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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Personal Stories
Rori DanielSeptember 25, 2020
0 71
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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Personal Stories
Fiona ParkinsonDecember 5, 2018
14 169
Meet Fiona Parkinson
Fiona Parkinson has a busy life. This active 45-year-old Australian juggles her duties of tending her family’s small hobby farm,…
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Personal Stories
Rori DanielSeptember 7, 2023
0 364
Captain Robert Cameron
A Nostalgic Look Back: Celebrating Success Stories for SS MonthOriginally published in April 2018, we’re taking a moment during Superficial…
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Personal Stories
Rori DanielJuly 7, 2022
7 198
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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SSRA OFFICIAL MERCHANDISE

Welcome to the SSRA Bonfire Store

Where every purchase fuels the fight against an ultra-rare brain disorder known as Superficial Siderosis

Superficial Siderosis is a neurological condition that stealthily invades the brain and spinal cord, leaving a trail of progressive disability in its wake. It’s a rare disorder that often goes unrecognized, leaving those affected to grapple with its debilitating effects in the shadows.

The Superficial Siderosis Research Alliance (SSRA) was born out of the urgent need to bring this condition to light. We are a dedicated group of patients, caregivers, and medical professionals committed to raising awareness, fostering research, and ultimately finding a cure for this devastating disorder. However, the journey is not an easy one. Small patient communities like ours face an uphill battle in garnering attention and funding for research. But we believe in unity and the strength of shared purpose.

Our Bonfire T-shirt store is more than just a place to buy a shirt. It’s a platform for you to join our mission to stand with us in the fight against Superficial Siderosis. Every shirt sold helps raise vital research funds and amplifies our message, spreading awareness far and wide. So, wear your SSRA shirt with pride, knowing that you’re part of a global community striving to change the narrative of Superficial Siderosis. Together, we can make a difference.

Together, we can ignite the bonfire of hope.

News

June 18, 2023
117
The Neurological Alliance Petition Hand-in

Department of Health and Social Care Members of The Neurological Alliance Co…
December 28, 2022
53
A Rare Reunion

From Tweetup to Meetup Rhys and Deb, 2019 It had been over…
June 22, 2022
119
Community Forum Launches

Welcome to the Superficial Siderosis Discussion Boards While the popularity of social…
February 20, 2020
37
Introducing Mass General Research Institute

Rare Disease Week kicks off for the SSRA with a trip to…

Rori Daniel
Hi Robert, they're all fixed now. Here's the link for you to...
Robert Huber
The "Register" button for the June 12, 2025 conference is no...
Denise Clark
I have been reading all sorts of information on ss and came...
Denise Clark
I have a neurologist in Velpraiso, Indiana. She has 2 patien...
Rose
Hi Rose living in Texas just diagnosed with SS a few months...

Finding Harmony Through Challenge: Mikko Pettinen’s Story

Getting Involved & Raising Awareness

The Cochlear Implant Journey – A Year On

Intervention at Only 23: What May Sound Scary Is a Blessing in Disguise

A Decade of Strength: Gary’s Journey with Superficial Siderosis

Deborah Hatch

Julianne’s Superficial Siderosis Odyssey

Read The Latest

Living Your Best Life

Patient Stories

Welcome to the SSRA Bonfire Store

Where every purchase fuels the fight against an ultra-rare brain disorder known as Superficial Siderosis

News

News

Ask the Experts: Superficial Siderosis Q&A Panel

Intervention at Only 23: What May Sound Scary Is a Blessing in Disguise

Finding Harmony Through Challenge: Mikko Pettinen’s Story