Living Your BEST LIFE with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond simply treating the symptoms. Both your physical and mental health will benefit. By… Read More... "Chair Yoga for Mobility and Balance"
Author: Living With Superficial Siderosis
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. Read More... "One More Family"
Twenty-five years have passed since rare disease advocacy organizations first recognized the need for creating patient-powered registries to attract meaningful engagement with researchers. A patient-powered registry (PPR) or patient-powered research network (PPRN) empowers individuals to contribute to translational science in meaningful ways. Read More... "The Superficial Siderosis Patient Registry"
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… Read More... "Introducing Mass General Research Institute"
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.… Read More... "Believe in Hope 2019 Benefit"
Everyone loves something free but too often there’s some kind of string attached. The item might be free but the cost of shipping and handling is outrageous, or in claiming the free item you end up in a never-ending membership.… Read More... "Who Doesn’t Love a Freebie?"
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… Read More... "Introducing the Superficial Siderosis Research Alliance"
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,… Read More... "Meet Dr. Michael Levy"
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… Read More... "Spotlight Profile: Amanda Fearn-Banfield"
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… Read More... "Meet Rhys Holmes"
Superficial Siderosis Life Expectancy It’s human nature to wonder How long will I live? When you’ve been diagnosed with a life-changing ultra-rare disorder like superficial siderosis, thoughts like this can consume you. Superficial Siderosis Life Expectancy, four words make it… Read More... "Life Expectancy of Superficial Siderosis Patients"
Superficial Siderosis Webinar Transcript Presented by Dr. Michael Levy To view the recorded webinar you may watch here Download a copy of the transcript and slides here Click on the individual slide to view larger Hi, my name… Read More... "Superficial Siderosis Webinar Transcript"
Superficial Siderosis Webinar In this webinar, Dr. Michael Levy, The Johns Hopkins Hospital, Department of Neurology explains just precisely what Superficial Siderosis is. Listen to an explanation of the known causes, how your doctor will make the diagnoses and what… Read More... "Superficial Siderosis Webinar"
Superficial Siderosis Symptoms List There are more than 30 recognized clinical Superficial Siderosis symptoms. Sensorineural Hearing Loss, Ataxia, and Myelopathy are considered to be the three classic signs. We have used these as parent categories¹ for ease of sorting… Read More... "Superficial Siderosis Symptoms"