One More Family

Be Counted

Our superficial siderosis Facebook family is a tightknit group. We share our problems and successes; we listen and learn from each other. It doesn’t matter that we’ve never met because, along the way, it began to feel like we know each other. Still, no matter how our group has grown these past years, there will always be one more diagnosis, and one more family learning someone they love has superficial siderosis.

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The Decade that Was

End of a decade

The eve of a new year is a time for reflection. When I look back on our lives at the end of 2009 I’m reminded of how carefree we felt. A long wished for grandbaby joined our lives, dreams we would hike the Grand Canyon from rim to rim together, crawfish boils, Halloween parties, vacation trips, outdoor adventures camping, and hiking. Life was a nonstop activity. 2019 find us saying goodbye to the decade that was. A decade that began filled with promise is ending with changes so profound, if someone had given me a peek into the future, I would have never believed. It’s ironic this new decade begins with 2020. Our road ahead may be bumpy but we are determined to tackle this new year with 20-20 vision. 2019 is ending with so many new possibilities I am feeling hopeful once again. The vision for Living with Superficial

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Introducing the Superficial Siderosis Research Alliance

SSRA Together slider e1574265436682

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 daughter is one of the lucky few to receive a correct diagnosis early on in the progression. Our search for treatment options has now included surgery to repair an on-going bleed in an attempt to stop the build-up of hemosiderin and trying to remove the neurodegenerative existing iron through chelation. While we hope she will be given the chance for a fairly normal life, we understand that research is critical to the long term success for those with this disease.  We have experienced first-hand how rare this disease is and the

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The Pathway To Healing

Pathway

What if research could identify a way to give your body a fighting chance? Kick-start the path to healing? Ataxia, sensorineural hearing loss, and myelopathy; These are the real enemies you confront because of superficial siderosis. Yes, free iron wreaks havoc, but this mix of symptoms will rob you of your independence and your wellbeing. The damage at the cellular level creeps along annoyingly slow for many years until one day you realize, “What’s happening with my body? To my life?” The goal of surgery is clear. To stop an active bleed from creating a heavier or more widespread iron build-up. Newly diagnosed patients are often confused by the chelation process. Will it make the symptoms better? Will it make me better? The purpose of chelation is to remove the iron and stop your cell damage from progressing. It won’t address the damage already done. In theory, if you remove

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