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HELP US DEFEAT MSA NOW
Defeat MSA Alliance is a US based 501(c)(3) charity that aspires to balance efforts to support patients, educate medical professionals, raise public awareness and nurture promising research.
MISSED THE MSA CONFERENCE?
NOW WATCH THE VIRTUAL MSA CONFERENCE
ON DIAGNOSIS – DR ANTHONY LANG:
ON TREATMENTS – DR EDWIN GEORGE:
SPEECH & SWALLOWING
– J. KILENY & BECCA WALLACE:
ON CLINICAL TRIALS – DR HORACIO KAUFMANN:
ON MSA RESEARCH – DR PATRIK BRUNDIN:
PHYSICAL & OCCUPATIONAL THERAPY
– M. WEAVER & K. VRYHOF:
News from Social Media
Paul Humphrey, suave frontman of '80s Toronto new wave band Blue Peter, dies at 61
www.alaskahighwaynews.ca
TORONTO — Singer-songwriter Paul Humphrey, whose Hollywood good looks and theatrical stage presence commanded attention as the frontman of 1980s new wave band Blue Peter, has died at 61.
Just posted a photo https://www.instagram.com/p/CN0zxlDhR4V/?igshid=ooi4b08yd9g
Just posted a photo https://www.instagram.com/p/CN0zKPrhzGA/?igshid=7r01ly5j7jhk
Thank you @TheravanceBio for your efforts to help those with MSA & for raising awareness during this month! 💜🙏
For #MSAAwarenessMonth, we encourage you to check out @DefeatMSA to learn more about #MSA and its impact on patients and their families: https://bit.ly/39epvZo. Together, we can work to raise awareness and make a difference for those living with MSA. #raredisease
MSA Research
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“Together, We Can and Will Defeat MSA Forever!”
MSA Expert
Spotlight
Wouter Peelaerts, PhD
Dr. Wouter Peelaerts is an experienced neuroscientist with special expertise in degenerative brain diseases. He earned his Ph.D. in biomedical sciences from KU Leuven and subsequently completed a postdoctoral fellowship there focused on neurobiology and gene therapy under the mentorship of Prof. Veerle Baekelandt. His efforts helped uncover new insights that further link the abnormal protein alpha-synuclein to neurodegenerative diseases, in particular Parkinson’s and Multiple System Atrophy. He has received numerous accolades for his research, including the 2020 JiePie award for MSA research, a prestigious 2017–2019 Fulbright Fellowship and the ATCG and ID&T postdoctoral award. In 2017, he joined the lab of Dr. Patrik Brundin at Van Andel Institute, MI, USA. His current research focuses on drug repurposing and how infections can trigger Multiple System Atrophy. Dr. Peelaerts serves on the Scientific and Medical Research Advisory Committee for the six charities that make up MSA United International Consortium, which includes Defeat MSA Alliance (USA). He is Chair of the Alliance’s Scientific Research Section.
List of Publications
Christopher T. Tulisiak, Mercado G, Peelaerts W, Brundin L, Brundin P. 2019. Chapter Seventeen – Can infections trigger alpha-synucleinopathies? Progress in molecular biology and translational science. Vol 168. Pages 299-322.
Quansah E*, Peelaerts W*, Langston JW, Simon DK, Colca J, Brundin P. 2018. Targeting energy metabolism via the mitochondrial pyruvate carrier as a novel approach to attenuate neurodegeneration. Mol Neurodegener 13:28.
*Contributed equally
Peelaerts W, Outeiro TF. 2017. Synuclein misfolding as a therapeutic target. Disease-modifying therapies and targets in neurodegenerative disorders. Academic Press.
Peelaerts W, Baekelandt V. 2016. ɑ-Synuclein strains and the variable pathologies of synucleinopathies. J Neurochem 139(Suppl 1):256–274.
Spotlight Links
“Sticking With MSA” -Dr. Wouter Peelearts (Defeat MSA Alliance Blog Launch, April 2019)
Integrated DNA Technologies and Advanced Technologies and Community Giving Foundation award (2017)
FWO postdoctoral fellowship (2017 – 2020)
Annual Award for Movement Disorders, best scientific article published by a young investigator (2015)
about the
Defeat MSA Awareness Shoe – #KickMSA
The Defeat MSA Awareness Shoe ™ has traveled to multiple countries, rubbed shoulders with some notable people and visited many famous landmarks. The Shoe is a tool for spreading MSA awareness, increasing support for MSA patients and their caregivers and fighting MSA by raising vital research dollars. It’s journey is undertaken in memory of all those that have died due to MSA and in support of all those presently fighting Multiple System Atrophy!
Learn more about the story and the globetrotting journey of the MSA Awareness Shoe here or via www.MSAshoe.org
#DefeatMSA #KickMSA #DeFeetMSA
ABOUT
The Defeat MSA Awareness Shoe – #KickMSA
The Defeat MSA Awareness Shoe ™ has traveled to dozens of countries, rubbed shoulders with some notable people and visited many famous landmarks. The Shoe is a tool for spreading MSA awareness, increasing support for MSA patients and their caregivers and fighting MSA by raising vital research dollars. It’s journey is undertaken in memory of all those that have died due to MSA and in support of all those presently fighting Multiple System Atrophy!
To date, the Shoe has “Kicked MSA” in multiple countries across the world.
Learn more about the story and the globetrotting journey of the MSA Awareness Shoe here or via www.MSAshoe.org
#DefeatMSA #KickMSA #DeFeetMSA
Join the world-wide MSA Awareness initiative
Join the world-wide MSA Awareness initiative
PATIENTS NEED OUR HELP
Defeat MSA Alliance invites all our friends and allies, around the world, to join us in this noble fight, to speak for those who cannot, with one mind, one heart and one voice: to defeat MSA forever!
Join the world-wide MSA Awareness initiative
OUR LEGACY GRANTS
OUR
LEGACY
GRANTS
The Defeat MSA special Individual Named Legacy Grants program enables donors to fund a scientific research, medical education, patient support or public awareness grant and name it in their own name, in tribute to someone or in memory of a loved one. The Legacy Grants program designates four levels of grants: $15,000 (Platinum), $10,000 (Gold), $5,000 (Silver) and $2,500 (Bronze). MSA research grants begin at the $10,000 level. Please email us: legacyfunds@defeatmsa.org, if you are interested in finding out more about this lasting gift.
MSA BLOGS
Caregiver’s Blog
MSA AWARENESS WARRIORS ZOOM BACKGROUND
USE ZOOM? DOWNLOAD A BACKGROUND WHICH HONORS ALL THOSE BATTLING MSA FOR MSA AWARENESS MONTH! #defeatmsa #kickmsa #msawarriors #zoomlife #zoombackground #msaawarenessmonth #msaawareness #MultipleSystemAtrophy #msaheroes #msahero
“On Speech & Swallowing” – (MSA Conference, Pt 6)
Panel 1: Speech & Swallowing - Jennifer Kileny, SLP and Rebecca Wallace, SLP
“Are we there yet?..No”- Anne Kastelic (Caregiver, Ohio)
Caregiver Blog Post #2 The road to diagnosis... Are we there yet?...No Now?...No When are we going to get there? Said anyone who has taken a road trip. Our trip took 3 1/2 years to get a doctor to agree to a diagnosis of "possible/probable MSA" and we were seeing...
Researcher’s Blog
POSSIBLE NEW DRUG
Curious about Biohaven's New Drug and How it Works? Check out this graphic for further information
NEW DRUG TRIAL FOR PEOPLE DIAGNOSED WITH MSA AND NOH
NEW DRUG TRIAL FOR PEOPLE DIAGNOSED WITH MSA AND NEUROGENIC HYPOTENSION (BLOOD PRESSURE PROBLEMS): FROM THERAVANCE BIOPHARMA: For some people with MSA, parts of the nervous system may not work as well at regulating blood pressure, potentially resulting in a sudden...
“ANNOUNCING NEW MSA GENETIC STUDY IN CANADA”
November 23, 2020 WINDSOR, ON - Defeat MSA Canada/Vaincre L’AMS Canada, Defeat MSA Alliance: Defeat Multiple System Atrophy and MSA United International enthusiastically announce a new genetic study in partnership with the Canadian Open Parkinson's Network (C-OPN)....
Advocate’s Blog
JOIN US DURING MSA AWARENESS MONTH!
JOIN US FOR MSA AWARENESS MONTH! Pick One Our Awareness Activities: https://www.msaunited.org/msa-awareness-months-activities/
MSA AWARENESS ANGELS ZOOM BACKGROUND
USE ZOOM? DOWNLOAD A MSA AWARENESS MONTH ZOOM BACKGROUND - HONORING ALL OUR MSA WARRIORS OR ONE THAT PAYS TRIBUTE TO ALL LOST TO MSA! #defeatmsa #kickmsa #msawarriors #zoomlife #zoombackground #msaawarenessmonth #msaawareness #MultipleSystemAtrophy #msaheroes...
MICHIGAN GOV DECLARES MARCH AS MSA AWARENESS MONTH
Our thanks goes out to Jodie Burke Danko and Michigan Governor Gretchen Whitmer for another year of making Michigan aware of Multiple System Atrophy! The Governor declared March 2021 as MSA Awareness Month! #defeatmsa #kickmsa #msaawareness #MSAAwarenessMonth...
Patient’s Blog
“Physical & Occupational Therapy” – (MSA Conference, Pt 7)
Panel 2: Physical & Occupational Therapy - Michele Weaver, PT and Kerri Vryhof, OTR
“Current Treatments”- Dr. George (MSA Conference, Pt 3)
"Current Treatment Options for MSA" - Edwin George II, MD, PhD, (Wayne State University, Detroit, USA)
“Finding Balance with MSA” – Joshua Calvert (Patient, Australia)
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...
“Defeat MSA Alliance is an amazing organization, giving voice to those affected by this little known, devastating disease. I have watched this grass roots effort grow since the beginning as a work of love and devotion by its founders. Indescribable grief and suffering has been channeled into positive action to help fund promising research and provide support for others dealing with MSA. It is an important and worthwhile organization and I hope to see it continue to serve more and more people in need.”
Elena Fracassa, MS
“I have observed this charity grow since it’s inception. The charity remains true to its objective of sponsoring clinical research, supporting patients and families living with this dreadful disease, through support groups, loaner equipment through the loaner closet program and networking on social media to connect families sharing their experiences across the world. This disease does not have a marathon or a 5k run in its name; so the charity also uses an intriguing device: a traveling shoe as a symbolic marathon to spread awareness among lay public about this devastating disease. “
Dr. Pratik Bhattacharya, MD, MPH
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