Multiple System Atrophy Awareness

Spreading awareness worldwide

Quest to Cure MSA

September 28, 2013

Please watch this new VIDEO:  Rex Griswold’s Quest to Cure Multiple System Atrophy

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MSA Awareness still has some catching up to do

September 23, 2013

When Professor Gregor Wenning met with patients in Sydney last June he mentioned that Multiple System Atrophy is just as common (or rare) as ALS and Huntington’s Disease. Both of those diseases are well known by the general public. He said “With MSA we are a few years behind in our awareness”. Part of the problem with awareness was that for many years MSA was called by three separate names depending on which symptoms were most prominent. If you had mostly balance issues (cerebellar ataxia) it was called Olivopontocerebellar atrophy, if you had mostly parkinsonism it was called Striatonigral Degeneration and if you had mostly autonomic symptoms it was called Shy-Drager Syndrome. Even though Multiple System Atrophy was first proposed in 1969 as one disease entity that encompassed all of the above possible symptom manifestations, it wasn’t until 1989 that it started to be used more in the scientific literature. In 1998 research and clinical experts met and decided on a strict set of diagnostic criteria to allow doctors to more easily make the correct diagnosis of possible or probable Multiple System Atrophy. These criteria were refined even further in 2007 by comparing the observed symptoms with pathology reports of confirmed cases of Multiple System Atrophy. Still today the only way to diagnose MSA with 100% certainty is after death with a prearranged brain donation. The hope is that a biomarker will be found that will allow a definite diagnosis to be made very early in the disease so that interventions may happen sooner.

View the presentation by Prof Wenning

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Announcing New Worldwide Movement Disorder Society MSA Study Group (MODIMSA)

September 20, 2013

Goals of the new Worldwide Movement Disorder Society MSA Study Group (MODIMSA) – a collaborative network for MSA researchers led by Professor Gregor Wenning:

We plan to develop a common data-set, including disease-specific validated rating scales for harmonized data acquisition. Second, we intend to launch a global MSA patient registry. Third, we will launch studies focusing on the discovery of diagnostic and surrogate (bio)markers, and determination of environmental and genetic underpinnings. Finally, we will develop consensus (best-practice) guidelines for the standard of care in MSA (based on the principles of evidence-based medicine).

To this end, we defined the following specific aims:

1. To establish a global patient registry
2. To set up a decentralized biomaterial bank and thereby define standard operating procedures to harmonize blood, CSF and brain tissue sampling.
3. To identify MSA genetic risk loci using large-scale genome-wide association studies
4. To develop, translate and validate additional MSA-specific rating scales
5. To define and validate autonomic progression markers
6. To define and validate MRI and functional imaging surrogate progression markers
7. To develop interventional trial guidelines
8. To develop best-practice (evidence-based) guidelines for pharmacologic as well as non-pharmacologic treatments.
9. To investigate MSA pathophysiological mechanisms and screen candidate compounds in preclinical MSA models

Need for a study group in the field
Multiple system atrophy (MSA) is a rare and relentlessly progressive movement disorder with an estimated prevalence of 4/100,000 people (Schrag 1999). There is currently no treatment available to significantly alleviate motor and autonomic symptoms or to modify the natural course of the disease. In addition, there are no widely accepted guidelines on symptomatic treatment strategies available.

To date, clinical MSA research has been limited by the low prevalence rate preventing individual research sites from studying sufficient patient numbers. Thus, a coordinated effort at an international level is required to advance MSA research in the field of biomarker discovery, early diagnosis, definition of genetic underpinnings and translational drug development. Consequently, an administrative framework for global collaborative MSA research is needed.

Prof Wenning welcomes donations towards this effort email ProfGKWenning@MSAawareness.org for details.

See:  http://www.movementdisorders.org/about/leadership/committee_details.php?content_id=1184

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TGen MSA Research Registry

September 7, 2013

TGen MSA Research Registry

“Quest to Cure MSA in honor of Rex Griswold”

Thank you for your interest in the Translational Genomics Research Institute(TGen) MSA Research Registry.

While we are not currently enrolling participants in a study at this time, adding your name to our registry database allows us to contact you if/when you become eligible for a research study.

Your Privacy Matters

Your contact information will go directly to the Clinical Research Coordinator at TGen. TGen strictly adheres to established confidentiality procedures that are intended to protect the identity of research participants.

If you have questions prior to completing the online registry form, please contact the Clinical Research Coordinator by email at: msaregistry@tgen.org.

Register Today!

To begin the registration process, please visit www.curemsanow.org

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New MSA Research Study

September 7, 2013

Seeking Volunteers for Multiple System Atrophy Research Study

The Department of Neurology at the University of Michigan is conducting a research study of brain imaging and clinical symptoms, including problems with movement and loss of balance, speech and swallowing difficulties, significant drop in blood pressure and bladder and/or bowel regulation in Multiple System Atrophy (MSA).

Seeking patients diagnosed with MSA. Subjects may be either male or female, ages 30 and over.

Eligible volunteers will undergo:
- Questionnaires on symptoms
- Movement and memory testing
- Brain MRI Scan
- PET Brain Scans

Participants will receive compensation for study participation at completion of the study. Volunteer fees are paid and support of travel and lodging costs are available.

Call: 734-936-8281
Fax: 734-764-6444
Email: arijit@umich.edu

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Genetic Mutations Identified for Multiple System Atrophy

August 15, 2013

“A large worldwide collaborative effort to identify genetic mutations in patients with multiple-system atrophy (MSA) has finally paid off — and offers a surprising hint about the molecular targets at work and how neurologists might think about treating patients. Right now, there are no treatments for the complex and disabling condition.”

Read the full article from Neurology Today

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MSA Presentation by Prof Gregor Wenning

August 14, 2013

Professor Gregor Wenning met with MSA patients in Sydney Australia in June 2013. You can view a video of his presentation and informal discussion with the Sydney group here:
http://vimeo.com/relivetheday/ review/68744603/81811a9e7d

Prof. Dr. Gregor K. Wenning, MD PhD MSC

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Update: US National Bill for MSA Awareness Month

August 5, 2013

Back in June we reached out to Representative Keith Ellison’s office (Minnesota) to ask if he would be the sponsor of a National Bill designating March as MSA Awareness Month. His congressional aide Rick Jauert had passed away of MSA in early June. Rick had once posted on the MSA Awareness Month Facebook page asking if anyone had proposed a bill in congress. I’m happy to report that I heard today from Keith Ellison’s legislative assistant in Washington DC that she will start working on the wording of this legislation. I will share more updates as I get them. – Thanks to all for your hard work during March 2013 to get more recognition for MSA, your efforts have encouraged all of us to greater achievements for MSA!  Best regards, Pam Bower

Rick Jauert with Michelle Obama

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Continuing Medical Education: MSA and Autonomic Disorders Workshop

View the brochure

Register on the website

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Applying for Disability Benefits with Multiple System Atrophy

Guest Blog
by Molly Clarke

mac@ssd-help.org
http://www.disability-benefits-help.org/blog

 

July 2, 2013

A diagnosis of Multiple System Atrophy (MSA)—a degenerative neurological condition—can affect an individual’s entire life. Although the symptoms of MSA progress differently for each individual, many people find that they can no longer work or earn a living once their symptoms reach a certain point. Loss of income and lack of medical insurance can cause a significant financial burden.

If you or a loved one has been diagnosed with MSA, you may qualify for Social Security Disability (SSD) benefits. The following article will give you a general overview of the SSD system and will provide you with the information needed to begin the application process.

Read Molly’s full article here.

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