Introducing the Superficial Siderosis Research Alliance

SSRA

Meet Kyle and Sue Dempsey There is no greater motivating force than the sense of urgency and concern you experience as parents when your child is diagnosed with superficial siderosis, an ultra-rare neurodegenerative disease that affects less than one in three million persons worldwide. Superficial siderosis entered our lives as a result of head trauma from an auto accident. Our…

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Meet Dr. Michael levy

meet dr. michael Levy

The Superficial Siderosis Research Alliance is pleased to announce Michael Levy MD, PhD as the SSRA Board Chief Medical Advisor. Dr. Levy, is a neurologist with 10 years of clinical and research expertise in rare neuroimmunological disorders.This Houston, Texas native earned his medical degree from Baylor College of Medicine. He then completed his residency in the Johns Hopkins neurology…

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Patience

Patience

If there is a single lesson our superficial siderosis community should be annoyingly familiar with, forward progress never happens overnight. We always seem to be waiting -appointments, test results, news. Whoever decided patience is a virtue should step forward and explain themselves. Playing The Waiting Game A few weeks ago we introduced the Superficial Siderosis Research Tissue project. While…

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Making Our Voice Heard

rare disease week capitol hill

Superficial siderosis is an ultra-rare condition with a small patient population. Our community knows all too well how difficult the journey to a diagnosis and then care. Too often hope dwindles leaving you to wonder how we can make our voice heard when our numbers are so small? A disease is classified as rare in the United States if…

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Rare Disease Week 2019 on Capitol Hill

Rare Disease Week

Living with Superficial Siderosis will be heading to Capitol Hill in Washington DC this weekend to join with fellow rare disease advocates, patients, and caregivers from across the country. Representatives from all fifty states will gather to share experiences, tell their stories and discuss with our legislatures how important we as a community count on their much-needed support for…

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Spotlight Profile: Amanda Fearn-Banfield

Amanda Profile

Amanda Fearn-Banfield is a creative wordsmith. This wonderful British fireball is not only the behind-the-scenes force responsible for navigating The Silent Bleed Superficial Siderosis Charity through the complexities of the UK but also keeps the charity website, www.thesilentbleed.co.uk fresh with the latest information. If you visit the Silent Bleed website you will find they offer an online donation opportunity….

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Our Superficial Siderosis Community: Meet Fiona Parkinson

súper siderosis community members

Fiona Parkinson has a busy life. This active 45-year-old Australian juggles her duties of tending her family’s small hobby farm, animal menagerie, preserving award-winning homegrown food, and mothering three handsome young men. Fiona is also battling Superficial Siderosis. I first noticed signs in April of 2015. It came on suddenly after getting tonsillitis. I was suddenly dizzy and off…

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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 officially recognized by the U.S. Social Security Administration. On August 20, 2018, the U.S. Department of Social Security released a press release outlining their expansion of the compassionate allowance list of severe and incapacitating diseases that qualify U.S. residents fast-tracking SSI…

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Our Superficial Siderosis Community: Meet Rhys Holmes

súper siderosis community members

  Rhys Holmes loves music. A 28-year-old Welshman, he spent time in the music program at Glamorgan University. An accomplished lead guitarist and background vocalist, Rhys followed his dream of hitting the road. He spent time traveling through London in a van with fellow bandmate Nick Byrne while working for a supermarket. In 1998, when Rhys was only eight,…

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The Power Of Community

community

We’re proud to publish the first of many collaborations with blogger and Superficial Siderosis activist Rori Daniel. Find her powerful, insightful and informative blog site here. –  thesilentbleed.co.uk   Fear is a powerful emotion. Anxiety shows no sympathy. Fear destroys if you give it power. A rare disease diagnosis, especially one as unknown as Superficial Siderosis, forces you to…

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Our Superficial Siderosis Community: Meet Robert Cameron

súper siderosis community members

Robert Cameron has seen the world. Graduating with a degree in Marine Transportation from the United States Merchant Marine Academy he rose through the ranks and took command of his first vessel in 1980. A voyage that would continue for more than 25 years, Captain Robert traveled the world; Australia, New Zealand, South Africa, Japan and the United States…

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