Defeat MSA Alliance Announces New Global Research & Support Consortium: "MSA United International"
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. In addition to the two US charities, the consortium includes: Defeat Multiple System Atrophy – Vaincre L’Atrophie Multisystématisée (Canada); Defeat Multiple System Atrophy (Australia and New Zealand);
Combattiamo l’Atrofia Multisistemica (Italy) &
Asociación Síndrome Shy-Drager Atrofia Multisistémica (Spain)
Honoring Those Who Give Hope & Compassionate Care !

We recognize ALL family members and tireless other care-givers, paid and volunteers that provide life affirming care to those challenged with this insidious and deadly beast, called Multiple System Atrophy!

You are at the forefront of the Alliance’s mission. Like no other organization, we are all the family, friends and patients too.

Our MSA Caregiver Support Group, Toll-Free Support Line, Research Pages, Research Advisors and many other ways that our volunteers make a difference. Specifically, we would like to thank:

Susan Young
Olivia Romano
Cherie Miller
Beth Foster
Kathy Samuel
Mark Lassam
A Michelle Steptoe
Dr. Pratik Bhattacharya
Dr. Wouter Peelaerts
Dr. "Teo" Oybek Turgunkhujaev
Rosemary Du Mont
Patricia Boylan
Pam Smith Howells
Mike Smith
Corey Whittlesey Sutton
Pam Getz
Dustin Rios
Matthew Heuston
Carrie Postema
Jacqui Dyach
Cheryl Katz Weiss
Donna Taylor Schmanek
Rosemary Arbuthnot
Jerry Brandt
Mitch & Christina Torabi
Lise Brunet-Allaire
Marilee-Hill Anderson
Barbara Flanagan

T here are many other volunteers that we want to mention that have given of their time and talents to help Defeat MSA Alliance and its partners!
For a more complete list, please take a look here:

(https://defeatmsa.org/thank-you-to-all-our-recent-volunteers/)

We also want to thank Kym Thompson , former administrator of the MSA Caregivers Journey Facebook Group! Without your tireless work, we would never be where we are today! MUCH THANKS KYM!

Also, we want to thank the founding and longtime administrators of the largest MSA group on FB: Ruth Miranda Hardy and Stephanie Miranda Willcocks . We are grateful for your pioneering work!

Lastly, we want to thank these dedicated companies and associations for their support of our work and the MSA cause:

BIOHAVEN PHARMACEUTICALS

THERAVANCE BIOPHARMA

H. LUNDBECK A/S

MOVEMENT DISORDERS SOCIETY (MDS)

AMERICAN ACADEMY OF NEUROLOGY (AAN)

Yet, even though this a rare and still much misunderstood condition, our strength comes from all corners of the globe – so we also wish to thank all of the people active in our six consortium partners.

Together, We Will Defeat MSA Forever!

“A Day for Susana” Web Streaming plus a LIVE Chat with Susana Schnarndorf and "Susana" Film Makers – September 19, 2020

The DEFEAT MSA ALLIANCE  is very pleased to announce the first charity showing of  “A Day for Susana”  ( Um Dia Para Susana ) on Saturday, September 19, 2020 this amazing, feature-length documentary will be streamed live at the conclusion of the 2020 Defeat MSA United Virtual Conference! 

The event will also include a live discussion with filmmakers, Giovanna Giovanini and Rodrigo Boecke r (Club Soda Films) and with the MSA warrior and six time Ironman winning, Para-champion herself, Susana Schnarndorf!
 
Susana began having symptoms in her late 30s, and yet at 48, she competed and won a silver medal in the 2016 Rio Paralympics as a swimmer on behalf of Team Brasil.
 
To extend her vision into the decades ahead, Susana has also recently joined nearly a dozen
others who have created a Defeat MSA Alliance Legacy Grant – The Susana Schnarndorf Fund for MSA [ DONATE HERE ] is dedicated to medical research and supporting poorer patients in less developed regions of the world, such as Brazil and other Latin American countries.

Join Us on September 19 th for the conference, the live streaming of the film and especially in giving thanks for Susana’s courage and perseverance!


https://www.youtube.com/watch?v=6Qqs9Zir7EM
Glenda Halliday, PhD – University of New South Wales, Sydney, AU Joins Scientific Advisory Board

Defeat MSA Down Under (Australia and New Zealand) is pleased to welcome a notable new member to the Defeat MSA Down Under Scientific and Medical Research Advisory Board ,

Dr. Glenda Halliday is a Professor of Neuroscience at the University of New South Wales and Director of the Sydney Brain Bank. She is a well-regarded researcher in the area of neurodegenerative diseases, particularly the Atypical Parkinson related disorders such as MSA.

Speaking about Dr. Halliday, Olivia Romano , VP of Defeat MSA Down Under, relayed her fellow board members’ sustained interest in asking Dr. Halliday to come aboard.

“Dr. Halliday leads a large research team in Sydney and is especially interested in the less common brain diseases such as MSA. Having her come aboard is a win for all those suffering from MSA not only in Australia and New Zealand, but also around the world. We are delighted that she was willing to join us.”

Interested in reading further about this recently formed partner charity, Defeat MSA Down Unde r and how to get involved, please visit:  www.MSAdownunder.org.au
Defeat MSA Australia and New Zealand is the sole MSA charity down under.


Legacy Funds and Grants

At little-to-no-cost today, you and your family can be also recognized (or not) for your generosity throughout the MSA and rare disease community by setting up a research, education or patient
support LEGACY FUND or GRANT in your name, in tribute to or in memory of a loved one that is
funded sometime well into the future. To find out about the potential tax advantages and lasting
benefits, please email: director@defeatmsa.org

Both Defeat MSA/Vaincre AMS Canada and Defeat MSA Australia and New Zealand also have instituted Legacy Programs with similar tax advantages and funds can be earmarked for MSA Research, Medical Education, Patient Support or Public Awareness.


Where in the World is our beloved MSA Awareness Shoe?
The well-traveled and much loved Defeat MSA Awareness Shoe is on it’s way to the Down Under home-base, into the loving arms of Olivia Romano, VP of Defeat MSA Down Under in Melbourne, Australia!

Thank You - Pamela and Richard Woolford - for the longterm hosting gig - for our dear globetrotting shoe. It was kickin’ around Brisbane, Australia and the surrounding areas!
 
To learn more about the Defeat MSA Awareness Shoe, it’s global mission, or to help raise awareness of Multiple System Atrophy, visit the main MSA Shoe page: www.MSAshoe.org

Or either the USA (www.DefeatMSA.org ) or Canada ( www.MSAcanada.ca) charities.

If you would like to become a short-term host for the shoe in AU or NZ, please visit Defeat MSA Down Under: www.MSAdownunder.org.au

Looking for a Fascinating Netflix Change-Up?
Here Are Three Podcasts Not to Miss!

“Long Live The Brains” (LLTB) is a series on brain diseases – their causes, potential cures and the professionals who pursue them in the spirit of “Bill Nye, The Science Guy” . These podcasts are co-hosted by Dr. Philip Tipton , a neurologist at the Mayo Clinic (Rochester, MN) and Kandice Jacobs Robinson, who leads Kandice Jacobs Creations.

Both Dr. Tipton and Ms. Jacobs have a passion for neurodegenerative diseases, such as Alzheimer's, Parkinson's, and now Multiple System Atrophy(MSA). As you know, these diseases are particularly cruel and can impair how a person moves, thinks, and responds to their environment.
 
Each "Long Live The Brains" podcast is mostly interview-based to keep listeners up to date on the state of healthcare, research involved in the care and study of these diseases, and resources available to those impacted. These fascinating segments pack a lot of insight and information into an easy-to-listen-to, entertaining and FREE audio resource.

Just click on one of the links below, and stream or download the program of interest through your podcast service player (or join one at no cost). Hours of quality listening just in time for summer and keeping safe around the house.

Click to Listen:


In this episode of LLTB, Dr. Tipton and Ms. Jacobs introduce Multiple System Atrophy (MSA) that includes an interview with Philip Fortier, Executive Director of Defeat MSA Alliance. Mr. Fortier's brother succumbed to MSA. Mr. Fortier discusses many of the struggles that his brother faced and what it was like to watch as this disease took his brother's independence and, eventually, his life. 


Part Two continues the interview with Philip Fortier.This segment provides details on many of the great efforts of the Alliance and its partnering charities that make up a consortium of six charities, called MSA United International (www.msaunited.org)


Dr. Tipton answers listener questions on safety issues faced by people with Multiple System Atrophy. Topics include difficulties regulating ones blood pressure, urinary function, speech and swallowing difficulties, as well as a very serious issue of a particular sleep disturbance – which can even be fatal!
CURRENT MSA CLINICAL DRUG TRIAL: M-STAR

Good News - The enrollment period for the M-Star Study is soon coming to an end. Then, by late 2021, we should know the results of this current trial. Biohaven is testing a drug that shown promise for possibly slowing Multiple System Atrophy.


On Behalf of Our MSA Community, A BIG THANK YOU to BIOHAVEN FOR STANDING UP TO MSA! All the people involved with the Alliance and our affiliated charities are keeping our fingers crossed!

To see Biohaven's study criteria, recent updates, and more comprehensive information and please visit: www.MSAresearchstudy.com
Current Known MSA Treatments - Summary
While there is still no cure, one can download a good overview summarizing the various current medical treatments for MSA. The 16 page document provides a glimpse of MSA KNOWN TREATMENTS . (www.defeatmsa.org/what-is-msa/known-treatments)

This document is intending as a starting point to learn more about how doctors currently treat many of the symptoms associated with MSA.

In this document, you’ll find a summary that is directly downloadable, free and can be easily accessed by clicking here: www.defeatmsa.org/wp-content/uploads/2020/07/OVERVIEW-KNOWN-MSA-TREATMENTS-DEFEAT-MSA-ALLIANCE-2020-1.pdf

Please Note:
In all cases, patients and their families, friends and other caregivers should speak with a health provider for any questions pertaining to diagnosis and/or treatment.
GLOBAL MSA VIRTUAL CONFERENCE - SEPT 19, 2020

JOIN US FOR THE WORLD'S FIRST VIRTUAL MSA CONFERENCE!

** SATURDAY, SEPTEMBER 19, 2020 **

With Keynotes By MSA Experts:
Anthony Lang, OC, MD, FRCPC
Patrick Brundin, MD, PhD
Edwin George, II, MD, PhD

ANTHONY E. LANG, OC, MD, FRCPC, FAAN, FCAHS, FRSC

Dr. Lang is Professor and previous Director of the Division of Neurology at the University of Toronto where he holds the Jack Clark Chair for Parkinson’s Disease Research. He is the Director of the Edmond J. Safra Program in Parkinson’s Disease He has published over 750 peer-reviewed papers and is one of the most highly cited investigators in the field of Movement Disorders. Among his awards and distinctions he was appointed as an Officer of the Order of Canada in 2010; in 2011 he was elected a Fellow of both the Canadian Academy of Health Sciences and the Royal Society of Canada.
PATRIK BRUNDIN, MD, PHD

VAI Associate Director of Research
Professor, Director of the Center for Neurodegenerative Science.

Dr. Brundin is one of the top cited researchers in the field of neuroscience with more than 350 publications on Parkinson’s disease and related topics. He has 35 years of experience studying neurodegenerative diseases. He was among the first to articulate the “prion-like” hypothesis, which describes how abnormal proteins spread from cell to cell in the brain, causing the cellular damage that perpetuates Parkinson’s, Multiple System Atrophy and Lewy Body Dementia.
EDWIN GEORGE, II, MD, PHD

Former Chair, Michigan Parkinson's Foundation, Assistant Professor of Neurology, Wayne State University School of Medicine, Harper University Hospital and the John D. Dingell Veterans Administration Hospital, Director of the Movement Disorders Center, Wayne State University. Dr, George is chairman of the Professional Advisory Board of the Michigan Parkinson's Foundation, and serves on the Movement Disorders Strategic Planning Committee of the American Academy of Neurology. He is Co-Director of the Neuropathophysiology curriculum for the Wayne State University School of Medicine.




DEFEAT MSA ALLIANCE



DEFEAT MSA UNITED