Meet Kelly Morgan

Kelly Morgan profile

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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Meet David M.Dickson Jr.

David Dickson Jr.

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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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. Michael 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

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Spotlight Profile: Amanda Fearn-Banfield

Amanda Profile FB

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 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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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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