Living With Superficial Siderosis

Breaking News

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Education
Rori Daniel4 weeks ago
1 265
Empowering the Superficial Siderosis Community on Rare Disease Day
Today, February 28th, marks Rare Disease Day—a global movement dedicated to raising awareness and advocating for the millions of people…
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Advocacy
Rhys HolmesJuly 16, 2024
247
Getting Involved & Raising Awareness
Getting involved in events to raise awareness of superficial siderosis.
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Best Life
Rhys HolmesJuly 7, 2024
0 276
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…
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Personal Stories
Rachel KennerJuly 1, 2024
1 922
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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Living Your Best Life

Physical Therapy and Exercise
Rori DanielJanuary 26, 2023
2 464
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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March 6, 2022
Reclaiming Your Independence, A Guide to Managing Hearing Loss
September 2, 2021
Finding The Right Healthy Diet
July 7, 2024
The Cochlear Implant Journey – A Year On
September 3, 2021
Chair Yoga for Mobility and Balance

Patient Stories

Personal Stories
Rachel KennerJuly 1, 2024
1 922
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
Deborah HatchFebruary 27, 2024
0 341
Deborah Hatch
Rare Disease UK “You’re quite a celebrity around here,” my neurologist says, as mum and I meet him in London…
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Personal Stories
Rori DanielJuly 7, 2022
7 187
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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Personal Stories
Rhys HolmesNovember 6, 2022
0 130
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 DanielSeptember 7, 2023
0 355
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 16, 2018
0 405
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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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
51
A Rare Reunion

From Tweetup to Meetup Rhys and Deb, 2019 It had been over…
June 22, 2022
107
Community Forum Launches

Welcome to the Superficial Siderosis Discussion Boards While the popularity of social…
February 20, 2020
32
Introducing Mass General Research Institute

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

Felix
Really need help. I'm in Sydney, NSW Australia. My 57yr old...
Rebecca P. Morton
My medical history is complicated. I was having alot of issu...
Carol Agronow
I have had 2 mri's that both have SS as a diagnosis. Its pre...
John R Mitchell
Gail and John Mitchell...
Kay Mills
In manchester. If you would like to read up more on Robin th...

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

Captain Robert Cameron

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

Life Expectancy of Superficial Siderosis Patients

Meet Dr. Michael Levy

Meet Fiona Parkinson

When Neurology Has No Answers: My Journey Through the Maze of Superficial Siderosis

Running on Empty