Rare Disease Week 2019 on Capitol Hill

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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 an increase in the annual discretionary funding for the National Institutes of Health (NIH) and support an increase in funding for the Food and Drug Administration (FDA) in the Fiscal Year 2020. Monday, February 25th, we will spend the day learning how to effectively meet with legislatures, practice strategies with our advocate group members, and prepare to make the most of our day on Capitol Hill. Tuesday we head to the hill to spend the day meeting with multiple Members of Congress and their staff with our plan to lobby for

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Meet Fiona Parkinson

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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 balance with neurological symptoms. In the space of a couple of weeks, I went from an ordinary mum, working part-time cleaning and working our hobby farm, to having to walk with a stick, but with no idea why. When three days of preliminary testing in the hospital provided no answers, Fiona began a seven-month battery of multiple CT scans, five MRI scans of her brain and spine, and a Cerebral angiography. Vision, balance, and hearing test results suggested an undiagnosed neurological disorder such as Multiple Sclerosis or early Parkinson’s might be

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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 and SSDI decisions. The Compassionate Allowance Program The Social Security Compassionate Allowance program was designed to identify dangerous medical conditions that have been proven to result in incapacitating disabilities. The Compassionate Allowances program automatically pulls claims where a disease or condition meets the disability standard. The severity and life-altering aspects of these conditions allow a persons claim to gain approval based on the medical confirmation of the diagnosis alone.  “For nearly a decade, the Compassionate Allowance list has helped us identify and fast-track cases where individuals have diseases that are most likely to be approved

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The Common Thread Searching For The Unexplained

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Superficial siderosis is ultra-rare. In fact, if you searched the national or international rare disease databases until the last few years it wasn’t listed.  We should be glad so few will face a diagnosis of superficial siderosis, but you can’t help but wonder. Is there a common thread to be found? I often find myself thinking about this vey topic. Dr. Levy has said they don’t know why some people are overwhelmed by the blood infiltration. An unlucky spin of the wheel? I’m not medically educated but what if I brainstorm and toss around a few ideas? First, let’s talk about what we do know. Superficial Siderosis is not hereditary; you aren’t born with it. Superficial Siderosis is not contagious; you can’t spread it or catch it.  Age or gender do not play a significant role in the diagnosis; patients were diagnosed at an older age due to the slow nature of

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