Multiple System Atrophy Awareness

Spreading awareness worldwide

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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2013 MSA Coalition Annual Conference


The Multiple System Atrophy Coalition
cordially invites MSA Patients, Caregivers and Families
to attend
The 2013 MSA Coalition Annual Conference

 

Date: September 6-7, 2013
Location: Sheraton Milwaukee Brookfield Hotel
Milwaukee, Wisconsin
Host: Dr. Thomas Chelimsky

 

If you are interested in attending there are two steps to follow
1. REGISTER on our website
2. RESERVE YOUR ROOM at the special group MSA rate of $84 plus taxes = grand total per night is $ 96.13

If you have any questions or concerns please contact the MSA Coalition toll free 1-866-737-4999 or 1-866-737-5999 or email Judy Biedenharn jbiedenharn@msacoalition.org

About the 2013 MSA Coalition Annual Conference

 

Conference Fee: There is NO FEE to attend the conference, you are guests of the MSA Coalition. Please REGISTER so we can plan appropriately.
Click here to REGISTER for the 2013 MSA Coalition Annual Conference

 

Hotel and Travel: Attendees are responsible for their own travel and hotel expenses. Please RESERVE at the Sheraton Milwaukee Brookfield Hotel at the Special Group MSA rate of $84 plus taxes (total per night = $ 96.13)
Phone: (262) 364-1100 and ask for the MSA Group Rate
OR
Don’t forget to make your own  HOTEL RESERVATIONS at the Special Group MSA Rate https://www.starwoodmeeting.com/Book/MSA

 

Food Service: Food is provided FREE OF CHARGE by the MSA Coalition
Friday Night: Hors d’oeuvres and Beverages (6PM – 9PM)
Saturday: Breakfast Buffet (7:30 – 8:45 AM) and Lunch Buffet (Noon)
Beverages and snacks will be provided throughout the day.

 

*** Special Diet: If anyone in your party requires a special diet, you must let us know specifically what your dietary requirements are when you Register so we can give the hotel food supervisor notice of the special needs.

 

The 2013 MSA Coalition Annual Conference Agenda

 

Tentative Schedule

 

Sep 6: Friday Evening (6 PM – 9 PM)
Social Hour/Reception
for Patients, Caregivers, Family Members and Healthcare Professionals
Hors d’oeuvres and Beverages will be served.

 

Sep 7: Saturday (7:30 AM – 5 PM)
7:30 AM Buffet Breakfast (Free)
9:00 AM Medical Presentations
10:30 AM Break & Snacks
10:45 AM Medical Presentations
12:00 Noon Buffet Lunch (Free)
1:00 PM Medical Presentations
2:15 PM Break & Snacks
2:30 PM Medical Panel – Q & A
4:00 PM Patient/Caregiver/Survivor Breakout Sessions
5:00 PM Conference Closing

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Support the MSA Coalition’s Multiple System Atrophy Research Fund – Donate through their Crowdrise site

Fundraising Websites – Crowdrise

counter

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Major Milestone in Multiple System Atrophy Research

June 13, 2013

The Japanese MSA research group led by Professor Shoji Tsuji have been working very hard for several years to identify the first MSA gene. Their new paper, published in the New England Journal of Medicine, highlights their discovery of Mutations in COQ2 in Familial and Sporadic Multiple-System Atrophy.

Multiple System Atrophy was historically thought to be non-genetic in origin, however some extremely rare families with the disease have now provided important clues to help researchers better understand the sporadic disease as well.

Professor Tsuji has provided these points in summary:

1. We identified a causative gene, COQ2, for familial MSA.
2. We, furthermore, found that a common variant and multiple rare variants of COQ2 are associated with sporadic MSA with high odds ratios.
3. Homozygous or compound heterozygous mutations of COQ2 are involved in familial MSA, while heterozygous mutations of COQ2 are associated with sporadic MSA.

As with the discovery of the first genes for rare hereditary forms of Parkinson’s Disease, this exciting finding is expected to trigger a major explosion in pathogenesis research to hopefully, and finally, uncover the underlying cause of Multiple System Atrophy.

Read the full text of the paper in the New England Journal of Medicine

You can follow the parallel discussion about this gene discovery
in the Open MSA forum on facebook.

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