“Are we there yet?..No”- Anne Kastelic (Caregiver, Ohio)
February 27, 2020
6 Comments
Caregiver Blog Post #2 The road to diagnosis… Are we
Defeat MSA Alliance is an inclusive US based 501(c)(3) national charity that aspires to support patients, educate medical professionals, raise public awareness, nurture promising research and advocate for the MSA community.
TOGETHER, WE CAN & WILL DEFEAT MSA NOW!
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4 Ways to Support Our Efforts:
1) Create a Facebook Fundraiser:
https://www.facebook.com/fund/DefeatMSA/
2) Create a Virtual Fundraiser (dedications to a loved one are possible too):
https://www.justgiving.com/defeatmsaalliance
3) Donate Directly to Our Secure Website (dedications to a loved one are possible too):
https://www.defeatmsa.org/donate-to-us/
4) Via Check, Send to:
Defeat MSA Alliance, 29924 Jefferson Avenue, Saint Clair Shores, Michigan, 48082, USA
HELP US GIVE HOPE. CLICK LINKTREE TO CHOOSE A FUNDRAISER METHOD
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NO AMOUNT IS TOO SMALL – BECAUSE EVERY CENT GIVES HOPE NOW!
HELP PUT MSA ON PRIORITIES MAP – BE THE CHANGE YOU WANT TO SEE!
Pick A Speaker and A Presentation
Keynote Speaker: “On New Diagnostic Criteria – Professor Wassilios Meissner
Hot Topic: “The Case for a Paradigm Shift in Neurodegenerative Research” – Dr Alberto Espay
Keynote Speaker: “Progress Toward a Biomarker Based Diagnosis of MSA” – Dr. Edwin George
Keynote Speaker: “Multiple System Atrophy: Approaches to Treatment” – Dr. Anthony Lang
ON POSSIBLE CAUSE – DR PATRIK BRUNDIN:
“ON GENETICS AND MSA”
– ZIV GAN-OR, MD, PHD:
“NEW MSA CLINICAL TRIAL – GENE THERAPY”
– AMBER VAN LAAR, MD:
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Submit A Public Comment To Help Us. Thank You For Your Help.
“Together, We Can and Will Defeat MSA Forever!”
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)
The Defeat MSA Awareness Shoe ™ has traveled to multiple countries, rubbed shoulders with some notable people and visited many famous landmarks. Each 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 each MSA Awareness Shoe here or via www.MSAshoe.org
#DefeatMSA #KickMSA #DefeetMSA
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!
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.
Caregiver Blog Post #2 The road to diagnosis… Are we
Panel 1: Speech & Swallowing – Jennifer Kileny, SLP and
USE ZOOM? DOWNLOAD A BACKGROUND WHICH HONORS ALL THOSE BATTLING
ST. CLAIR SHORES, MI, February 10, 2021 – DEFEAT MSA
DEFEAT MULTIPLE SYSTEM ATROPHY AUSTRALIA AND NEW ZEALAND, Ltd., a
A BIG BIG THANK YOU TO ALL OUR RECENT VOLUNTEERS!
My name is Josh I am 46 years of age.
“Current Treatment Options for MSA” – Edwin George II, MD,
Panel 2: Physical & Occupational Therapy – Michele Weaver, PT
“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
“Defeat MSA Alliance 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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