Living With Superficial Siderosis

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Personal Stories
Rori Daniel4 weeks ago
0 345
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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Education
Rori DanielFebruary 28, 2025
1 303
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
251
Getting Involved & Raising Awareness
Getting involved in events to raise awareness of superficial siderosis.
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Best Life
Rhys HolmesJuly 7, 2024
0 284
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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Living Your Best Life

Best Life
Rhys HolmesOctober 12, 2021
2 629
Exercises for Balance and Mobility
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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March 6, 2022
Reclaiming Your Independence, A Guide to Managing Hearing Loss
May 8, 2022
Wellbeing Therapy
January 26, 2023
Retrain Your Brain with Vestibular Therapy
September 3, 2021
Chair Yoga for Mobility and Balance

Patient Stories

Personal Stories
Rori DanielJuly 16, 2018
0 406
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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Personal Stories
Rori DanielJune 15, 2024
1 546
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…
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Personal Stories
Rori DanielMay 30, 2015
1 150
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 HolmesAugust 31, 2022
4 299
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
Rori DanielDecember 12, 2019
6 353
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
Rhys HolmesSeptember 22, 2020
2 143
A Day In My Life
My Life With Superficial Siderosis Rhys Holmes In 2016 I was diagnosed with Superficial Siderosis, a rare degenerative neurological condition…
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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
52
A Rare Reunion

From Tweetup to Meetup Rhys and Deb, 2019 It had been over…
June 22, 2022
111
Community Forum Launches

Welcome to the Superficial Siderosis Discussion Boards While the popularity of social…
February 20, 2020
34
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...

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

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