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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A Day In My Life

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My Life With Superficial Siderosis In 2016 I was diagnosed with Superficial Siderosis, a rare degenerative neurological condition which is caused by bleeding into the cerebrospinal fluid over a sustained period of time. I had a brain tumour removed from the back of my head in 1998 when I was eight years old; this is believed to be the cause of my Superficial Siderosis. The blood which leaks into the cerebrospinal fluid eventually overwhelms the body’s capability to remove it completely, leaving iron deposits on the surface of the brain and spine. The iron is toxic to the nerves of the central nervous system (CNS) and causes all sorts of mostly irreversible, damage. In 2018 I underwent an operation to seal the back of my head. It appears to have stopped the leakage of blood into my cerebrospinal fluid. The issue I have now, like most people with Superficial Siderosis,

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Meet Kelly Morgan

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The SSRA is excited to introduce everyone to grant writing team member, Kelly Morgan. This has been a challenging few weeks for everyone in our country world but the SSRA work continues with the help of some wonderful volunteers. Kyle, Sue and I had the pleasure of meeting Kelly and her husband when they traveled to Wisconsin to attend the 2019 SSRA Benefit dinner. Join us in welcoming Kelly to the SSRA.- Rori My name is Kelly Morgan, I am 57 years old and I was diagnosed with superficial siderosis in November 2011. A few years after the birth of my third child, I noticed a loss of my sense of smell and taste.  Because life gets in the way, after a few years of missing these two senses, I went to an ENT and he recommended an MRI.  Once a superficial siderosis diagnosis was confirmed I realized that all

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Introducing Mass General Research Institute

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Rare Disease Week kicks off for the SSRA with a trip to our Chief Medical Advisor, Dr. Michael Levys’, new research home with the Mass General Research Institute. What better way to celebrate than a giveaway! With a few clicks or taps, you can be entered to win some really sweet swag from the good folks at Massachusetts General Hospital. You have a chance to win an Official MGH Men or Woman’s zip-front fleece jacket, MGH Ball Cap, or an official grey scarf embroidered with our SSRA logo. There will be several winners so why not enter? The contest details are below. Mass General is the #1 Hospital on the East Coast and named #2 in America by U.S. News and World Report. They are the only hospital in America to be recognized across all 16 specialties assessed by U.S. News. Let’s talk about Dr. Levys’ new facilities for a

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Believe in Hope 2019 Benefit

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We were thrilled to welcome just shy of 100 supporters to our 2019 Believe in Hope Benefit Dinner, December 7, 2019, at the Ingleside Hotel in Pewaukee, Wisconsin. Our first Superficial Siderosis Research Alliance benefit dinner was indeed a fantastic evening. Racing against a very short deadline, SSRA event coordinator Sue Dempsey, SSRA President Kyle Dempsey, and our volunteers showed what the SSRA is capable of when a motivated group works together. Ticket sales were almost double original estimates requiring a venue change and room size upgrade to accommodate this wonderful group of people. Be sure to visit our benefit dinner photo gallery. The evening began with a guitar duo provided by SSRA treasurer Lloyd Gleisner and Jeff Nesheim during the pre-dinner meet and greet. Guests enjoyed cocktails as the silent auction bidding opened. Every auction item was successfully bid on before the night ended, and one lucky live bidder went

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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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Meet David M.Dickson Jr.

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David M. Dickson Jr. has always enjoyed a zest for an active life. From neighborhood quarterback to surfing, fishing, weightlifting, and mountain biking this outgoing Florida native loved staying on the move. In 1994 he traveled from his sunny home in Gainesville, Florida to begin a new rocky mountain adventure in Denver, Colorado as a popular server for the Famous Ruth Chris Steakhouse.  His attraction to fitness led him to become an ISSA Certified Personal Trainer before he moved on to mortgage banking. An epilepsy diagnosis in 2001 took David from banking back to the fitness industry when he became an American College of Sports Medicine certified personal trainer.   In 1969, when David was ten months old, he experienced a Tonic-Clonic seizure (formally referred to as a grand mal seizure) from hydrocephalus. His surgeon performed a Right Occipital Craniectomy with an Endoscopic Third Ventriculostomy. This is a surgical procedure offered

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A Tough Decision

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I remember when we heard our daughter had Superficial Siderosis several years ago, we did not know what to do or think. She had no symptoms, she had been in a car accident about four years prior and we had scheduled an MRI because another doctor noticed her tongue had some involuntary movement.

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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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Meet Dr. Michael levy

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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 program in 2005, a fellowship in neuroimmunology in 2008, was a member of the faculty at Johns Hopkins University since 2009 and was the Director of the Johns Hopkins Neuromyelitis Optica Clinic.  He first became aware of superficial siderosis during his residency at the Johns Hopkins Hospital when a 48-year-old patient presented with unexplained symptoms and a two-year history of worsening gait, clumsiness, leg cramping, memory impairment, and dysarthria. The patient’s medical history revealed a two-week hospital admission at the age of three after being involved in an auto accident that

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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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Spotlight Profile: Amanda Fearn-Banfield

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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. They will happily accept one-time donations or if you are generously inclined you may now schedule a regular monthly gift. https:/www.thesilentbleed.co.uk/donate donate Amanda, tell everyone about your background. I’m currently a freelance copywriter – so that’s words for websites, brochures and even beermats and bag labels in the past. I work with startups and large companies – the agency I work with has just landed a contract to rebrand a city, which should be interesting. I spent years working in office management, which helps with the practical side of running the

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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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Meet Rhys Holmes

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  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, he went through surgery to remove a benign brain tumor. Other than fighting off a bout of meningitis post surgery he returned to school and happily resumed his passion as an avid footballer playing for his local club, Cardiff Soccer School of Excellence and Newport Schoolboys. When symptoms returned in 2001 Rhys was diagnosed with hydrocephalus. His surgeon inserted a VP shunt which led to multiple surgeries during the next four years. His doctor informed his dad he would have to give up football. The news devastated Rhys so his father

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The Power Of Community

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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 face your worst fears. It’s hard. We are not built to face fear alone. Thankfully, early patients and caregivers sparked the creation of our most powerful resource. Community. Your future has changed so how should you plan? How is your family going to be affected? Where should you look for care?. Chronic illness brings countless unanswered questions. The very nature of superficial siderosis or any rare disease should make finding your community a priority. One person may struggle to search for answers, but there is an astounding well of knowledge waiting

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Meet Robert Cameron

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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 making memories for a lifetime. A meningocele was found wrapped around the nerves at the T-4 area of Roberts’ spine. The discovery led to a 12-hour surgery and resulted in an uncontained slow bleed. In 2005, a diagnosis of superficial siderosis changed his course. Retirement finds him splitting his time between Florida, where he is he under the care of Dr. James Meschia, Head of Neurology Jacksonville Mayo Clinic and his summer home on Nantucket island. Opting to give chelation therapy a chance, he feels there has been a slowing of

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