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Research
Rori DanielJuly 15, 2025
0 279
Charting a New Course for Superficial Siderosis
Superficial Siderosis Symposium Research Roundtable On June 13, 2025, the final morning of the Superficial Siderosis Symposium, a group of…
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Neurological Reserve
Rori DanielJuly 11, 2025
0 310
Understanding Neurological Reserve
Why It Matters for Superficial Siderosis Suppose you live with superficial siderosis (or care for someone who does). In that…
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News
Rori DanielJune 22, 2025
0 152
Welcome Rachel Kenner, New Editor of Living With Superficial Siderosis
Living With Superficial Siderosis began in 2014 as one small corner of the internet where Gary and I could make…
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Live Event
Rori DanielJune 2, 2025
4 375
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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Living Your Best Life

Best Life
Rori DanielMarch 6, 2022
3 337
Reclaiming Your Independence, A Guide to Managing Hearing Loss
Living Your BEST LIFE with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond simply treating the symptoms. Both your physical and…
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July 7, 2024
The Cochlear Implant Journey – A Year On
January 26, 2023
Retrain Your Brain with Vestibular Therapy
September 2, 2021
Finding The Right Healthy Diet
September 3, 2021
Chair Yoga for Mobility and Balance

Patient Stories

Personal Stories
Rachel KennerJuly 1, 2024
1 1,085
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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Personal Stories
Julianne SinglineSeptember 16, 2023
4 805
Julianne’s Superficial Siderosis Odyssey
Originally published in June 2021, we’re revisiting some of the most inspiring personal journeys gracing our pages. Today, we’re peeking…
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Personal Stories
Rhys HolmesAugust 31, 2022
4 317
The Daily Frustrations of Superficial Siderosis
Making Plans Living with superficial siderosis is very frustrating, to say the least; it’s hard to plan anything due to…
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Personal Stories
Rhys HolmesNovember 6, 2022
0 152
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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Personal Stories
Rori DanielMay 30, 2015
1 160
A Very Good Day
When the World Begins to Fade Imagine a world where phantom smells fill the air, and life’s melodies gradually fade.…
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Personal Stories
Rhys HolmesDecember 13, 2020
4 1,298
The Struggle Of Dual Neurological Conditions
Superficial Siderosis and Hydrocephalus Having superficial siderosis is one thing, but sometimes like me, it’s possible to have other disabling…
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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 22, 2025
152
Welcome Rachel Kenner, New Editor of Living With Superficial Siderosis

Living With Superficial Siderosis began in 2014 as one small corner of…
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
57
A Rare Reunion

From Tweetup to Meetup Rhys and Deb, 2019 It had been over…
June 22, 2022
129
Community Forum Launches

Welcome to the Superficial Siderosis Discussion Boards While the popularity of social…
February 20, 2020
46
Introducing Mass General Research Institute

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

Margaret Permenter
Where is the doctor located? I’m desperate to find one!...
Jeanne Mansfield
Thank you Rori all the information on SS. I'm learning so mu...
Jeanne Mansfield
I read about the bladder, but can't find anything about the...
Steve Grinstead
I am so glad that you referred to Mayo. They operated in 201...
Rori Daniel
Hi Samuel https://ssra.livingwithss.com/blog/event/symposium...

Understanding Neurological Reserve

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

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