Living With Superficial Siderosis

Physical Therapy and Exercise
Rhys HolmesSeptember 24, 2023
0 164
Morrello Para-Triathlon 2023
Putting the ‘TRY’ in Triathlon Back in 2020 when I first start having neuro-physiotherapy at the Morrello Clinic, Allison my…
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Personal Stories
Julianne SinglineSeptember 16, 2023
4 271
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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Bladder/Bowel
Rori DanielSeptember 12, 2023
0 207
Coping with Urinary Incontinence
Urinary incontinence is a medical condition characterized by the involuntary loss of urine. While we refer to incontinence as a…
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Personal Stories
Rori DanielSeptember 7, 2023
0 155
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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Living Your Best Life

Best Life
Rhys HolmesOctober 12, 2021
2 327
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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January 26, 2023
Retrain Your Brain with Vestibular Therapy
May 8, 2022
Wellbeing Therapy
September 3, 2021
Chair Yoga for Mobility and Balance
March 6, 2022
Reclaiming Your Independence, A Guide to Managing Hearing Loss

Patient Stories

Personal Stories
Rori DanielMay 30, 2015
1 62
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
Rori DanielJune 13, 2023
3 254
A Year of Struggle and Change
A year of struggle and change; that’s what it has been for Gary, our family, and myself. Emerging from the…
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Personal Stories
Rhys HolmesDecember 13, 2020
4 271
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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Personal Stories
Bena TravisSeptember 4, 2023
8 424
When Neurology Has No Answers: My Journey Through the Maze of Superficial Siderosis
A Nostalgic Look Back: Celebrating Success Stories for SS Month We’re taking a moment during Superficial Siderosis Month to revisit…
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Personal Stories
Rori DanielJuly 7, 2022
6 38
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
Fiona ParkinsonSeptember 9, 2022
1 63
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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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
103
The Neurological Alliance Petition Hand-in

Department of Health and Social Care Members of The Neurological Alliance Co…
December 28, 2022
43
A Rare Reunion

From Tweetup to Meetup Rhys and Deb, 2019 It had been over…
June 22, 2022
46
Community Forum Launches

Welcome to the Superficial Siderosis Discussion Boards While the popularity of social…
February 20, 2020
7
Introducing Mass General Research Institute

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