Finding A New Purpose

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Losing the ability to carry on with something your life revolved around is extremely tough to take, as well as being depressive. I have always been a huge Liverpool FC fan, and that drove my passion for football. When I was growing up, I was a keen footballer (soccer player). I played for my local team, Newport Schools AFC, Newport Soccer School of Excellence. I also attended the Cardiff City Soccer School of Excellence.   When I was 8 years old, complications followed the removal of a brain tumour in 1998. I needed a shunt (a device that drains excess brain fluid from the head into a cavity in the abdomen area) inserted into my head. This relieved the raised pressure that had been causing me to suffer from episodes of vomiting, dizziness, blurred vision, and extreme lethargy. The end of 2002, after months off school due to illness because of

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The Decade that Was

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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

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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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Patience

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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 progress has been slow the new project addition on the patient registry should be complete soon. The participant information consent, enrollment questionnaire, and tissue donation consent forms have been checked and uploaded. I need to ask for a little help with our next section. What questions would you like listed with answers and made available as part of the FAQ? By creating the FAQ section using your input, we can provide you with real-world answers about the research tissue project. If you’re curious, then someone else is too. Send them to

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Making Our Voice Heard

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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 there are fewer than 200,000 confirmed cases. Fewer than 2,000 and you join the exclusive ultra-rare class. Superficial siderosis is classified as ultra-rare — lucky us. There are 7,000 recognized rare diseases and conditions, and in the U.S. alone one in ten will be diagnosed. Global Genes estimates there are over 300 million people worldwide fighting a rare disease. When you think about it, our voices might be small but together as a rare disease advocate community we can’t be ignored. Once life on the doctor-go-round slowed, I found myself searching

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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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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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