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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, nurture promising research and advocate for the MSA community.


MISSED THE 2020 MSA CONFERENCE?

WATCH THE 2020 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

Missed today's presentations from Defeat MSA Alliance All-Community Conference (Sept 24-Oct 2)? Here is Dr. Van Laar's presentation about the "GENE THERAPY FOR MSA" and the NEW CLINICAL TRIAL FOR MSA, take a listen. If you have MSA and are interested in this research, please complete our research registry to connect with us. We will give you all the details: defeatmsa.org/research-registry/youtu.be/gdbK2wmVECg ... See MoreSee Less
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JOIN US FOR THIS AMAZING CONFERENCE - World's Largest and Most Diverse MSA Gathering of Doctors, Researchers, Patients, Care-givers and Advocates! - 42 Experts, 8 languages, Multiple Topics and Representing 13 Countries!If you have not registered, visit here:www.defeatmsa.org/conference2021 ... See MoreSee Less
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Defeat MSA Alliance is pleased to announce the World Premiere of a New Documentary, Saturday, Oct 2, 2021 during the Second Annual All-Community Virtual Conference. This free film will be shown along with 2 other documentaries, "A Day for Susana" (Brazil) and "MSA: The Ian Macindoe Story" (Australia)"GLIMPSES" (New Zealand, 2021)“Glimpses” is a documentary produced by New Zealand filmmaker Guy Pigden about his uncle Gregory Wilsdon who lived in London, UK. The film, part of which was made by Gregory himself, recounts his life since his initial diagnosis with multiple system atrophy, the impact of the disease upon his wife and daughter but also provides an insightful glimpse into Gregory’s own personal journey. The film was made with a grant provided by Defeat MSA Alliance (US). All conference attendees are welcome to join us for the world premiere of this very profound film!!Conference Registration: www.defeatmsa.org/conference2021 ... See MoreSee Less
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Dr. Amber Van Laar speaks about a NEW Research trial for MSA - Gene Therapy! Take a listen and all are welcome to join the Question and Answer session with Dr. Van Laar. If you have not registered for the All-Community MSA Conference, register here: www.defeatmsa.org/conference2021#defeatmsa #KickMSA #MSAresearch #MultipleSystemAtrophy ... See MoreSee Less
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It's Father's Day in Australia today.
I need to remind you that not everyone has a father or still has one.

I lost my father to Multiple System Atrophy, a terminal neurodegenerative disease.

Please donate to @msadownunder if you can.
https://www.msadownunder.org.au/donate-to-us/

~ I miss you, Dad.

Defeat MSA is pleased to announce the World Premiere of a new documentary, Glimpses” (New Zealand), Sat, Oct 2, during Annual All-Community Virtual Conference; film was made with a grant provided by Defeat MSA Alliance (US). Free Registration: here: http://www.defeatmsa.org/conference2021

Sep 24-Oct 2: Don't miss the world’s largest gathering of the #MultipleSystemAtrophy community! @defeatmsa will offer talks with the most diverse experts, some 42 speakers representing 5 continents delivering speeches in 8 different languages. http://defeatmsa.org/conference2021

Sep 24-Oct 2: Don't miss the world’s largest gathering of the #MultipleSystemAtrophy community! @defeatmsa will offer talks with the most diverse experts, some 42 speakers representing 5 continents delivering speeches in 8 different languages. [http://defeatmsa.org/conference2021

LOOKING FOR OTHER WAYS TO GET INVOLVED?

LOOKING FOR OTHER WAYS TO GET INVOLVED?

Have A Suggestion? Want to Help Us? Have We Provided Information or Support?

Submit A Public Comment To Help Us. Thank You For Your Help.

“Together, We Can and Will Defeat MSA Forever!”

    MSA Expert
    Spotlight

    Wouter Peelaerts, PhD

    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)

    Fulbright grantee (2017–2018)

    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, community support, patient advocacy 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: $50,000 (Platinum), $30,000 (Gold), $10,000 (Silver) and $5,000(Bronze). Please email us: legacyfunds@defeatmsa.org, if you are interested in finding out more about this lasting gift.

    MSA BLOGS 

    Caregiver’s Blog

    “Are we there yet?..No”- Anne Kastelic (Caregiver, Ohio)

    “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

    UPDATE – Information from Biohaven RE: Verdiperstat

    UPDATE – Information from Biohaven RE: Verdiperstat

    JUNE 1, 2021 Defeat MSA Alliance Research Program Advisors: Important Questions & Answers from Biohaven RE:   Clinical Trial on Verdiperstat   Can I still join the trial? Answer:  Enrollment for the phase 3 study closed in July of 2020. When are we expected...

    *NEW* RESEARCH UPDATE FROM BIOHAVEN RE: VERDIPERSTAT (BHV-3241)

    Timeline: International Phase 3 Clinical Trial of Verdiperstat in Multiple System Atrophy "Top line results from the study are expected to be available in 3rd Quarter of 2021 and will help to characterize the potential benefits and risks of Verdiperstat in MSA. After...

    POSSIBLE NEW DRUG

    POSSIBLE NEW DRUG

      Curious about Biohaven's New Drug and How it Works? Check out this graphic for further information

    Advocate’s Blog

    MSA AWARENESS ANGELS ZOOM BACKGROUND

    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...

    Patient’s Blog

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    “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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