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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.
PRINT A SIGN TO THANK FRONTLINE WORKERS!
PRINT OFF A WINDOW SIGN FOR OUR FRONTLINE WORKERS FIGHTING AGAINST COVID-19!
#STAYHOME #SAVELIVES #MSAWARRIORS #MASKYOURSELF
PODCASTS
“Long Live The Brains”
Hosts
Philip Tipton, MD (Mayo Clinic)
&
Kandice Jacobs Robinson, LFDE
Fighting to Defeat MSA: Parts 1 and 2
“Safety Issues in Multiple System Atrophy”
News from Social Media
DefeatMSA Posts from Facebook
SELLING ANYTHING ON EBAY?
Sales that give a percentage to charity sell faster - their listings are prioritized and you would be helping to Defeat MSA!
Help Defeat MSA Alliance:
www.charity.ebay.com/charity/Defeat-MSA-Alliance/1520593
Support Defeat MSA Alliance on eBay
www.charity.ebay.com
Through eBay for Charity you can support the causes that matter most - to you - by buying and selling on eBay. We help nonprofits like Defeat MSA Alliance connect to over 145 million eBay community me...HELP US DEFEAT MSA FOREVER !!!
www.facebook.com/fund/DefeatMSA/
www.facebook.com
Create a Facebook fundraiser to raise money for a friend, nonprofit or yourself. Share your fundraiser with friends, get donations and reach your goal.Exercises for Atypicial Parkinsonism, which includes MSA... CLICK TO WATCH HERE: youtu.be/Vkx4QSWMiOM
If you’re looking for an exciting opportunity in PD research, check out two open positions for a post doc and a PhD at the Baekelandt lab ! - https://www.kuleuven.be/personeel/jobsite/jobs/55714343
Thank You Dr Ziv Gan-Or, Research Advisor for Defeat MSA affiliated charities, @ZivGanOr https://twitter.com/ZivGanOr/status/1276991092827860993
Most of my papers can be found as Open Access on PubMed or as preprints on @biorxivpreprint or @medrxivpreprint. I followed @AlbertoEspay footsteps, and just uploaded 10 papers that were not publicly available through http://shareyourpaper.org @OA_Button. Hope it helps!
This new paper from the @MayoClinic by Owen Ross and his team suggests that some GBA variants may be associated with multiple system atrophy. We will need much larger studies to know which variants are important for MSA. @MSACoalition @MSAshoe @DefeatMsa https://www.prd-journal.com/article/S1353-8020(20)30172-3/fulltext
MSA Research
Patient Programs
MSA Education
Public Awareness
Giving Programs
LOOKING FOR OTHER WAYS TO GET INVOLVED?
LOOKING FOR OTHER WAYS TO GET INVOLVED?
MSA Expert
Spotlight
Patrik Brundin, M.D., Ph.D.
Director, Center for Neurodegenerative Science, Van Andel Institute, Grand Rapids, Michigan
Dr. Patrik Brundin is one of the top cited researchers in the field of neuroscience with more than 350 publications on Parkinson’s and related diseases. He has 35 years of experience studying neurodegenerative diseases, disease pathogenesis and therapeutic neural transplantation into people. His current research focuses on pathogenic mechanisms of Parkinson’s as well as the development of new therapies that slow or stop disease progression or that repair damaged brain circuits. He was among the first to articulate the “prion-like” hypothesis, which describes how abnormal proteins related to the disease spread from cell to cell in the brain, causing the cellular damage that perpetuates Parkinson’s disease and related diseases such as Multiple System Atrophy.
List of Publications
Spotlight Links
- “Life on the river” – Reflection by Dr. Patrik Brundin in The Lanclet (neurology journal)
- The Patrik Brundin Lab (VAI)
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
“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...
“But I’d of had to miss the dance…” – Anne Kastelic (Caregiver, Cleveland, Ohio)
“But I’d of had to miss the dance…” – Anne Kastelic (Caregiver, Cleveland, Ohio) Today I opened Facebook to see a call for a caregiver writing opportunity for Defeat MSA’s “Caregiver’s Blog.” The idea is to share our story in an effort to help others on the MSA...
Researcher’s Blog
SEMINAR: “A-Syn Conformational Strains and Patient Perspective”
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...
“A Path Forward” – Dr. Amanda Woerman (Univ. of Massachusetts, Amherst)
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...
“Sticking With MSA” -Dr. Wouter Peelearts (Researcher, Michigan)
Sticking with Multiple System Atrophy
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.
Advocate’s Blog
THANK YOU TO ALL OUR RECENT VOLUNTEERS!
A BIG BIG THANK YOU TO ALL OUR RECENT VOLUNTEERS! Together, We Can and Will Defeat MSA Forever!! SANDRA BETTENHAUSEN MARY BETH MCCORD FLYNN MICHAEL SMITH DUSTIN AND CARLA RIOS DAMIEN GAFFNEY VINCE NEIL AND RAIN HANNAH MIKE BOYLAN, JR DR GREG AUNER DR ALESSIO DI FONZO...
New Charity and New Partnership Moves Forward – Down Under!
DEFEAT 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...
BIOHAVEN M-STAR STUDY & COVID19
As was posted in many of the groups last week, Biohaven Pharmaceuticals answered some of our questions regarding their current drug trial amid the coronavirus pandemic period. They composed their answers into a Q and A document. TRIAL PARTICIPANT QUESTIONS AND ANSWERS...
Patient’s Blog
“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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