Living With Superficial Siderosis | Digital Magazine of the SSRA

Breaking News

Read The Latest

Advocacy
Rhys HolmesJuly 16, 2024
183
Getting Involved & Raising Awareness
Getting involved in events to raise awareness of superficial siderosis.
Read More »
Best Life
Rhys HolmesJuly 7, 2024
0 185
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…
Read More »
Personal Stories
Rachel KennerJuly 1, 2024
1 710
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…
Read More »
Personal Stories
Rori DanielJune 15, 2024
1 383
A Decade of Strength: Gary’s Journey with Superficial Siderosis
It’s hard to believe it’s been 10 years since we began this journey in 2014. When we first received Gary’s…
Read More »

Living Your Best Life

Physical Therapy and Exercise
Rori DanielJanuary 26, 2023
2 413
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.
Read More »
May 8, 2022
Wellbeing Therapy
September 3, 2021
Chair Yoga for Mobility and Balance
September 2, 2021
Finding The Right Healthy Diet
March 6, 2022
Reclaiming Your Independence, A Guide to Managing Hearing Loss

Patient Stories

Personal Stories
Rhys HolmesDecember 13, 2020
4 877
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…
Read More »
Personal Stories
Rori DanielJuly 16, 2018
0 381
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…
Read More »
Best Life
Rhys HolmesJuly 7, 2024
0 185
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…
Read More »
Personal Stories
Rhys HolmesNovember 6, 2022
0 120
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…
Read More »
Personal Stories
Rori DanielJune 15, 2024
1 383
A Decade of Strength: Gary’s Journey with Superficial Siderosis
It’s hard to believe it’s been 10 years since we began this journey in 2014. When we first received Gary’s…
Read More »
Personal Stories
Rori DanielSeptember 25, 2020
0 66
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…
Read More »

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
111
The Neurological Alliance Petition Hand-in

Department of Health and Social Care Members of The Neurological Alliance Co…
December 28, 2022
49
A Rare Reunion

From Tweetup to Meetup Rhys and Deb, 2019 It had been over…
June 22, 2022
83
Community Forum Launches

Welcome to the Superficial Siderosis Discussion Boards While the popularity of social…
February 20, 2020
21
Introducing Mass General Research Institute

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

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

Getting Involved & Raising Awareness

The Cochlear Implant Journey – A Year On

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

Deborah Hatch

Julianne’s Superficial Siderosis Odyssey

Captain Robert Cameron

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

Getting Involved & Raising Awareness

The Cochlear Implant Journey – A Year On

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

Living Your Best Life

Retrain Your Brain with Vestibular Therapy

Wellbeing Therapy

Chair Yoga for Mobility and Balance

Finding The Right Healthy Diet

Reclaiming Your Independence, A Guide to Managing Hearing Loss

Patient Stories

The Struggle Of Dual Neurological Conditions

Camping with a Chronic Illness

The Cochlear Implant Journey – A Year On

What the SSRA Means to Me

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

Living In Upside Down World

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

News

News

The Neurological Alliance Petition Hand-in

A Rare Reunion

Community Forum Launches

Introducing Mass General Research Institute