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Author: defeatmsa@gmail.com

MSA Conference / Articles posted by defeatmsa@gmail.com

A BIG BIG THANK YOU TO ALL OUR RECENT VOLUNTEERS! Together, We Can and Will Defeat MSA Forever!! SERGEY POVALIAEVSANDRA BETTENHAUSENJENNIFER KILENYBECCA WEISSMARY BETH MCCORD FLYNNMICHAEL SMITHDUSTIN AND CARLA RIOSDAMIEN GAFFNEYVINCE NEIL AND RAIN HANNAHMIKE BOYLAN, JRDR GREG AUNERDR HORACIO KAUFMANNDR ALESSIO DI FONZODR ZIV GAN-ORDR EDWIN GEORGEDR ANTHONY LANGPROFESSOR GLENDA HALLIDAYDR HENRY HOULDENDR WOUTER PEELAERTSDR PETER LEWITTDR GUILIA LAZZERIDR JEFFREY KORDOWERDR PATRIK BRUNDINDR ALEXANDRA PEREZ SORIANODR GARY ZAMMITDR CARLOS COSENTINODR PRATIK BHATTACHARYADR MICHAEL SCHLOSSMACHERDR OYBEK TURGUNKHUJAEVJEANNINE BRAGGMIGUEL ANGEL DEL PINO ESTEBANCRAIG STEVENSBECKY AND MIKE STANDEFERDANIEL TENEVMONICA REMARTINIREV'D STEPHEN DONALDKYM THOMPSONSUSAN YOUNGROSEMARY DU MONTOLIVIA ROMANODESIREE FISHDONNA YOSTANDY MACINDOEVALERIE GARNEAUJOEL PHILIBERTKELLY MURPHYMARGARET MACLACHLANIAN MACLACHLANJENNY KILKENYBECCA WEISSMARY T MEAGHERKAREN FORHANCHERIE MILLERJOSHUA LEE CALVERTSTEPHEN DONALDPATRICIA BOYLANSHANE VALICENTIWIKIWIRA POKIHAARNETTA MICHELLE STEPTOEPAM SMITH HOWELLSCHERYL KATZ WEISSLINDA EPPELHEIMERHANNAH...

MSA Researcher Raphaella So, PhD candidate (Toronto), and Defeat MSA Patient Advocate Beverly K. Wilson offer some informed insights on Multiple System Atrophy in a recent talk sponsored by our friends at Cure Parkinson’s UK. Beverly’s presentation describes the difficulties in diagnosing this disease and highlights the urgent need for disease specific biomarkers. Defeat MSA Alliance would like to thank the following for their help: Cure Parkinson’s UK, Professor Raphaella So, Ms. Beverly Wilson and Defeat MSA Research Advisor Dr. Wouter Peelaerts. https://youtu.be/NudEmzJz-S8 ...

FOR IMMEDIATE RELEASE - 7/20/20 DETROIT, MI—Defeat MSA Alliance announces the formation of a new global consortium of charities for people living with Multiple System Atrophy. The consortium, officially named “Defeat Multiple System Atrophy United International,” is comprised of six diverse organizations that span the globe. Each member organization is operated solely by volunteers, without relying on salaried staff or contracts for services from profit driven businesses. Consortium members include: Defeat MSA Alliance – USADefeat Multiple System Atrophy – Vaincre L'Atrophie Multisystématisée - CanadaDefeat Multiple System Atrophy – Australia and New ZealandCombattiamo l'Atrofia Multisistemica – ItalyAsociación Síndrome Shy-Drager Atrofia Multisistémica – SpainDefeat MSA Awareness Shoe, A Global Awareness Campaign – USA The leaders of the consortium’s six charities have entered into a cooperative...

Multiple system atrophy (MSA) is a progressive neurodegenerative disease that affects a key area of the brain responsible for regulating vital bodily functions. As a result, patients with MSA develop orthostatic hypotension (a drop in blood pressure when moving from sitting to standing, which causes fainting or dizziness), difficulty regulating body temperature, impaired cardiovascular and respiratory function, and a loss of bladder or bowel control. In addition, patients may also have parkinsonian symptoms (difficulty moving their arms and legs, poor balance, slow movement, and sometimes tremors) or trouble with muscle coordination, which results in difficulty with chewing, focusing their eyes, or speaking. The name multiple system atrophy was first proposed in 1969 by J.G. Graham and D.R. Oppenheimer as a reclassification...

DEFEAT MSA ALLIANCE is very pleased to announce the first host charity showing of “A Day for Susana” (Um Dia Para Susana) on the evening of SATURDAY, SEPTEMBER 19, 2020 via online streaming!  The event will also include a live chat with filmmakers, Giovanna Giovanini and Rodrigo Boecker (Club Soda Films)  and with MSA warrior and world paralympian champion, Susana Schnarndorf. This is the first feature length documentary film about someone with Multiple System Atrophy. THIS IS AN EVENT NOT TO MISS! This amazing film will be streamed live as part of the 2020 Defeat MSA United Virtual Conference. This year’s conference, “MSA: A Path Forward, ” will bring together a wide spectrum of patients, caregivers, clinicians, researchers, allied professionals and...

Multiple System Atrophy (MSA) is a rare brain disorder that until recently was largely ignored by the research community. MSA is a rapidly progressing neurodegenerative disease caused by a decline of the body’s most basic and vital functions including breathing, digestion, urination, controlling blood pressure and movement. It is not known how MSA arises, and no environmental or genetic contributors have been identified. Several mechanisms are believed to contribute to the disease process. Brain inflammation, metabolic failure and protein accumulation are just some of the most important disease mechanisms and targeting all of these underlying features might be required to stop MSA from progressing. No disease-modifying drug currently exists for MSA and treatments are purely symptomatic. Over the last two decades, interest...

EFEAT MULTIPLE SYSTEM ATROPHY AUSTRALIA AND NEW ZEALAND, Ltd., a newly formed nonprofit, the first of its kind in Australia and New Zealand has forged a  partnership with Defeat MSA Alliance. Already a global leader in the fight against Multiple System Atrophy, the Alliance now adds a fifth nonprofit to its family of patient advocacy organizations. Multiple System Atrophy (MSA) is a rare, rapidly progressing neurodegenerative disorder that impairs the systems that regulate blood pressure, heart rate and the bladder – many of the basic bodily functions that the average person takes for granted every day. At present, there is no cure for MSA, no genetic tests to detect it, no known therapy to slow it and very few treatments to manage...

My name is Josh I am 46 years of age. My passions include surfing gardening, travelling, and cooking. I worked as registered nurse for 24 years both in Australia and the United Kingdom. I have been married for 20 years and have a 14-year-old son. I live in Illawarra in New South Wales Australia. I was diagnosed initially with Parkinson’s Disease and later with Multiple System Atrophy. Prior to my diagnosis, despite all my 24 years knowledge and experience within healthcare, I had never heard of Multiple System Atrophy. I had been very active prior to my illness. I surfed twice daily and have surfed in many places around Australia and all over the world including the USA, Europe, Scotland, England, New...