Multiple System Atrophy Awareness

Spreading awareness worldwide

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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Republican Majority House Leader speaks about medical research funding and Multiple System Atrophy

June 3, 2013

The 2nd most powerful man in US politics reveals for the first time publicly that his father suffers from Multiple System Atrophy.

Republican Majority House Leader Eric Cantor is working towards securing more medical research funding.  He’s inspired by family members who are battling cancer as well as by his father who has suffered with Multiple System Atrophy for more than 10 years.

Read the full article: Cantor Balancing Research Priorities Fiscal Concerns

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MSA Media coverage 2013

2013-Sep-25: World MSA Day: Nigerians to light candle
2013-Sep-23: MSA Cripples everyday Living
2013-Sep-19: Duo’s 10 country drive for MSA
2013-Sep-11: Buttonwillow Fundraiser  for MSA
2013-Sep-09: MSA Coalition selected as spotlight charity
2013-Sep-06:The Letter Writer who stole everyone’s heart
2013-Sep-05: Long Time Residents leave Fort McMurray
2013-Sep-04: Northera(Droxidopa) resubmitted to FDA
2013-Aug-30: Quest to cure Rex Griswold
2013-Aug-07:Dad made all the difference
2013-Aug-05: Dear newly diagnosed patient
2013-Jul-23: San Francisco giant scout loves life of travel
2013-Jul-18: Moving the Agenda on Movement Disorders
2013-Jul–17: Living while dying one day at a time
2013-Jul-11: Chelsea resubmits NDA for Northera
2013-Jun-08: VIDEO: Bonnie’s got game – and terrific aim
2013-Jun-06: To My Aunt Jane
2013-Jun-05: Rick A. Jauert
2013-Jun-03: Cantor Balancing Research Priorities Fiscal Concerns
2013-Jun-03: Rick Jauert longtime Washington aide to Minnesota Politicians Dies at 59
2013-May-20: Hucks Supports Charity Supports Friend
2013-May-20: William Fine suffered from Multiple System Atrophy
2013-May-20: Multiple System Atrophy (MSA) Research Grant Program Announced
2013-May-13: Mice Study Finds Cancer Drug May Work on Commpn Brain Diseases
2013-Apr-22: SDS/MSA Support Group Officially Changes Name to The Multiple System Atrophy Coalition
2013-Mar-28: Living with at terminal disease: Hope Matters by Gary L. Rose
2013-Mar-28: March 28th is National MSA Letter Writing Day
2013-Mar-27: MSA a daughter’s view by Angelina Cervone
2013-Mar-26: Walk raises more than $8000 for MSA
2013-Mar-24: VIDEO: The disorder with no known cause or treatment
2013-Mar-24: MSA Awareness Month Part 2 by Frank Cervone
2013-Mar-20: Multiple System Atrophy Awareness Month by Frank Cervone
2013-Mar-19: Foundation creates awareness on Multiple System Atrophy condition
2013-Mar-18: Olga Korbut joins the fight against MSA (article by the MSA Trust)
2013-Mar-15: VIDEO: Family shares mans’ experience with Multiple System Atrophy
2013-Mar-12: VIDEO: State of Pennsylvania passes resolution declaring MSA Awareness Month
2013-Mar-08: VIDEO: Rex Griswold and Dr. David Robertson describe Multiple System Atrophy
2013-Mar-08: VIDEO: Woman’s post raises awareness of Multiple System Atrophy
2013-Mar-05: 8000 Nigerians may be suffering from MSA
2013-Mar-05: VIDEO: Girl raises awareness about grandma’s terminal disease
2013-Mar-05: Cervone continues to raise awareness
2013-Mar-01: Chippenham widower’s hopes of helping others
2013-Feb-28: VIDEO: Sharon Sutton speaks about MSA on Rare Disease Day in Austin Texas
2013-Feb-28: Nancy Remley Whiteley psychotherapist
2013-Feb-15: OFFICIAL VIDEO: Arkansas house resolution on MSA Awareness Month (see HR 1005)
2013-Feb-15: VIDEO: Arkansas passes resolution declaring March MSA Awareness Month
2013-Feb-15: Shoe makes trek for MSA
2013-Feb-05: Natural history of multiple system atrophy: a prospective European cohort study
2013-Feb-05: March is Multiple System Atrophy Awareness Month
2013-Feb-02: VIDEO: Fundraiser for MSA held in Pittsford
2013-Feb-02: REM sleep disorder may lead to untimely death of brain cells
2013-Feb-01: Torrence teacher, historian and journalist R. Thomas Rische dies at 82
2013-Jan-31: Ohio Governor approves legislation for MSA View VIDEO
2013-Jan-29: Staying busy
2013-Jan-26: Local MSA patients gather for support
2013-Jan-23: Family’s plea for government help
2013-Jan-22: Donations pour in as Eric aims for £10,000
2013-Jan-22: Former State Senator Hinton Mitchem dies at 74
2013-Jan-18: Ex-FirstMerit executive, civic leader Howard Flood dies
2013-Jan-15: Sue helps sufferers of incurable MSA disease
2013-Jan-13: Love Stories: Oaklands showcases “Wedding dresses…
2013-Jan-08: Olga Korbut embraces MSA community

 

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