Rori Daniel

Living With Superficial Siderosis began in 2014 as a personal blog to keep friends and family informed after my husband, Gary, was diagnosed with superficial siderosis. Over time, it evolved into a trusted resource for patients and caregivers navigating this rare condition. In 2019, Livingwithss.com joined forces with the Superficial Siderosis Research Alliance (SSRA), and together we’ve grown into a global voice for research, advocacy, and education. Through shared stories and expert insight, we continue to raise awareness and push for progress—one patient, one breakthrough at a time.

Therapeutic Alternatives

Rori DanielApril 29, 2020
2 169

Combating Neural Damage

The holy grail of neurodegenerative disease research is discovering a pathway to healing—reversing neural damage, either through regeneration or surgical…
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Patient Registry

Rori DanielMarch 26, 2020
2 189

The Superficial Siderosis Patient Registry

Twenty-five years have passed since rare disease advocacy organizations first recognized the need for creating patient-powered registries to attract meaningful…
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News

Rori DanielFebruary 20, 2020
0 110

Introducing Mass General Research Institute

Rare Disease Week kicks off for the SSRA with a trip to our Chief Medical Advisor, Dr. Michael Levys’, new…
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SSRA

Rori DanielJanuary 14, 2020
0 80

Believe in Hope 2019 Benefit

We were thrilled to welcome just shy of 100 supporters to our 2019 Believe in Hope Benefit Dinner, December 7, 2019,…
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Mobility and Balance

Rori DanielJanuary 9, 2020
5 280

Balancing Act

Some days are better than others but you really start to worry about the future when you hear the unmistakable…
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Advocacy

Rori DanielDecember 31, 2019
0 72

The Decade that Was

The eve of a new year is a time for reflection. When I look back on our lives at the…
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Chelation Therapy

Rori DanielDecember 16, 2019
4 141

Is Your Chelation Working?

When the two-year study on the efficacy of Deferiprone was published one finding stood out. Patient-participant physicians submitted MRIs during…
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Personal Stories

Rori DanielDecember 12, 2019
6 473

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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Vision

Rori DanielDecember 6, 2019
0 128

Eye on Nystagmus

A 2021 Update Learning About Nystagmus It was late 2014. Gary and I were waiting for him to be seen…
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Advocacy

Rori DanielDecember 2, 2019
1 133

Meet David M.Dickson Jr.

David M. Dickson Jr. has always enjoyed a zest for an active life. From neighborhood quarterback to surfing, fishing, weightlifting,…
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Chelation Therapy

Rori DanielNovember 22, 2019
3 136

The Decision To Choose Chelation Therapy

Researching a rare disease on your own is tricky. Superficial siderosis is a serious diagnosis and most of the early…
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Neurological Reserve

Rori DanielNovember 10, 2019
7 120

Living With Superficial Siderosis

Saturday morning may have begun at our local community urgent care but it soon turned into a run to the…
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Neurological Reserve

Rori DanielNovember 2, 2019
0 117

Living With A Compromised Neurological Reserve

Metabolic stress is not a friend to the very young, elderly, or those who’ve been dealing with superficial siderosis for…
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Swallow

Rori DanielOctober 19, 2019
1 109

Small Victories

I wrote an earlier piece on livingwithss.com detailing Gary’s intermittent swallowing problem. The Danger Of Dysphagia outlines some serious risks…
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Education

Rori DanielOctober 11, 2019
4 70

Who Doesn’t Love a Freebie?

Everyone loves something free but too often there’s some kind of string attached. The item might be free but the…
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SSRA

Rori DanielOctober 9, 2019
1 98

Introducing the Superficial Siderosis Research Alliance

Meet Kyle and Sue Dempsey There is no greater motivating force than the sense of urgency and concern you experience…
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