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.

SSRA

Rori DanielAugust 3, 2019
18 529

Meet Dr. Michael Levy

The Superficial Siderosis Research Alliance is pleased to announce Michael Levy MD, PhD as the SSRA Board Chief Medical Advisor.…
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Treatment Journey

Rori DanielJuly 12, 2019
5 101

Radio Silence

Radio Silence You may have noticed the silence of late. Life becomes busy and complicated. Sometimes you need to step…
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Advocacy

Rori DanielApril 16, 2019
1 132

Patience

If there is a single lesson our superficial siderosis community should be annoyingly familiar with, forward progress never happens overnight.…
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Perspective

Rori DanielMarch 29, 2019
1 111

The Ripple Effect Of Chronic Illness

The Ripple Effect Of Chronic Illness Most of us will never plan on becoming full-time caregivers. However, some will tackle…
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Patient Registry

Rori DanielMarch 27, 2019
4 115

The Pathway To Healing

What if research could identify a way to give your body a fighting chance? Kick-start the path to healing? Ataxia,…
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Advocacy

Rori DanielMarch 8, 2019
3 87

Making Our Voice Heard

Superficial siderosis is an ultra-rare condition with a small patient population. Our community knows all too well how difficult the…
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Advocacy

Rori DanielFebruary 20, 2019
1 94

Rare Disease Week 2019 on Capitol Hill

Living with Superficial Siderosis will be heading to Capitol Hill in Washington DC this weekend to join with fellow rare…
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Education

Rori DanielJanuary 27, 2019
2 80

Your Daily Medications

Imagine living a life that revolves around medication. I know many of you can relate. Try keeping track of 200…
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Advocacy

Rori DanielJanuary 20, 2019
4 96

Spotlight Profile: Amanda Fearn-Banfield

Amanda Fearn-Banfield is a creative wordsmith. This wonderful British fireball is not only the behind-the-scenes force responsible for navigating The…
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Perspective

Rori DanielJanuary 7, 2019
0 90

Touching The Positives

Touching The Positives I recently came across an interesting question, If you were cured today, what would you do? For people…
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Treatment Journey

Rori DanielDecember 19, 2018
4 82

Surviving The Neurology Ride

The Patient Experience With The Neurology Ride A visit to Gary’s neurologist often brings to mind when you step up…
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Education

Rori DanielOctober 31, 2018
1 93

Six Steps To Becoming A Better Friend

We all learned how to be a friend early on but for those of us who know someone fighting a rare…
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Vision

Rori DanielOctober 10, 2018
1 163

Neurodegenerative Vision Problems

You move your eyes more often than your heart beats. Vision problems are one of the mysterious, unexplained symptoms people…
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Advocacy

Rori DanielAugust 21, 2018
0 56

When Small Details Equal Giant Victories

Superficial Siderosis Granted Compassionate Allowance Status The Superficial Siderosis community received validation this week as their status as rare disease sufferers’ was…
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Chelation Therapy

Rori DanielAugust 1, 2018
0 95

Countdown To The Last MRI

Our Chelation Journey This past week has seemed like a bad episode of Mission Impossible. We found ourselves desperately racing…
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Education

Rori DanielJuly 22, 2018
0 87

The Question Of Restless Leg Syndrome

Restless Leg Syndrome (RLS) has become an interesting discussion topic in Superficial Siderosis circles so my question: Is there…
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