Multiple System Atrophy Awareness

Spreading awareness worldwide

MSA NEWS UPDATE

2015-Jan-15

Multiple System Atrophy review published in prestigious New England Journal of Medicine

http://www.prlog.org/12409141-multiple-system-atrophy-review-published-in-prestigious-new-england-journal-of-medicine.html

Dr. Gregor K. Wenning, M.D, Ph.D.

 

2015-Jan-10

Alpha-Synuclein: Gateway to Parkinsonism

The alpha-synuclein symposium to be held next month in Innsbruck will bring together some of the top scientists now working in the field of PD research along with those studying MSA for three days of learning and discussion.

Read the conference program

2014-Dec-22

2014 has really been a very exciting and historical year for the MSA community. Please download the highlights here:
http://www.msaawareness.org/wordpress/wp-content/uploads/2014/12/2014-Christmas-Message.doc

HAPPY HOLIDAYS TO ALL!

2014 marks 20 years since I began my personal journey towards understanding this mysterious disease that touched our family.  I want to acknowledge Dr. David Robertson for founding the very first internet based forum for MSA families in the 1990’s.  Little did he know then what a difference this forum would make in the lives of families around the world.   In those early days, less than 100 people participated via email on the “Shy-Drager” listserv. Today that original forum has transformed and grown to nearly 2000 members.   In recent years, Facebook has become an important medium for making new connections globally. Collectively Miracles for MSA and the MSA Coalition facebook pages have over 10,000 fans and the MSA Awareness website has had over 70,000 visits.

It has really been a very exciting and historical year for the MSA community.

In January, several members of the board of the US based non-profit MSA Coalition and other ardent advocates travelled to Washingon DC to participate in FDA hearings and encourage the approval of the drug droxidopa for MSA and other patients who suffer from neurogenic orthostatic hypotension (low blood pressure when standing).  Largely due to the many poignant personal testimonies heard that day, the FDA panel voted 16 – 1 in favor of approval of the drug and a formal announcement was released in February.  Droxidopa is now readily available to those who are in need of another option for managing this troubling symptom.

In February, the largest fundraiser ever held for MSA was staged in Las Vegas, organized by Chef Kerry Simon and his team at Fight MSA.  $500,000 was raised and earmarked for MSA initiatives at the Lou Ruvo Center in Las Vegas where Chef Simon receives care.  This awesome fundraiser led to another pivotal event in November 2014 when more than 50 MSA research leaders and experts from around the globe convened in Las Vegas for the MSA Global Research Roadmap meeting.  This video of Dr Ryan Walsh explains some of the highlights of this pivotal MSA research meeting.  Besides researchers, there was also a panel of MSA advocates invited to this meeting who put forward their recommendations of MSA advocacy initiatives to be completed over the next 3-5 years.  The advocacy working group thanks all participants who completed their survey which formed the basis for their recommendations.

In March, at the urging of the MSA Coalition, house resolution 518 was introduced to congress by Representative Keith Ellison (MN).  The resolution expresses congressional support for the official recognition of March as Multiple System Atrophy awareness month.

In April, the MSA Coalition held its second round of research grant reviews, this time in partnership with CurePSP.  Two research projects were chosen and awarded grants totalling $105,000.  The MSA Coalition has now been involved with the disbursement of over $300,000 directly to MSA researchers in 2014.  This was a very exciting start to their MSA Research grant program which kicked off in the fall of 2013 with the very first round of grant reviews.

Two very exciting MSA research projects kicked off this spring in Europe as they received European Union funding of over 6.5 million Euros in total.  Sympath and MultiSyn are overlapping projects that aim to show whether the alpha-synuclein vaccines PD01A and PD03A are effective in MSA patients.  A clinical trial is being staged in France now in MSA patients who will receive the PD01A vaccine.  We eagerly await the results of this trial.

In May,  the MSA Coalition announced the election of new board officers and in June 5 new board members were welcomed to the MSA Coalition board of directors including Tom Looney, the first ever MSA patient to serve in this capacity.

In July, Neil and Malcolm Versel “Made their Mark for MSA”, embarking on an epic 800 mile MSA bike tour from Chicago to Washington DC to raise awareness and funds.   Along their route they were hosted by many MSA families and participated in several local fundraisers.  I hope Neil and Malcolm and others can be persuaded to make this an annual summer event that we all can look forward to supporting.

In August, the MSA Coalition’s Purple Rain Video challenge kicked off.  A very generous anonymous donor offered to match the first $25,000 of donations received.  To date we are still $10,000 short of this goal but, it’s not too late!  If you donate and designate “Purple Rain” your donation will still be matched but please hurry before this offer expires!

In September MSA Coalition Scientific Advisor Dr Philip Low received a grant for $600,000 by the FDA to fund a Phase 1 trial with stem cells in MSA patients.

On the eve of World MSA Day, MSA Coalition Scientific Advisor Prof Gregor K. Wenning was bestowed with the JiePie Schouppe award for MSA research and also received a cash prize of 10,000 Euros for his MSA focused neurobiology research projects at the Medical University of Innsbruck.

In October, the MSA Coalition held its annual patient/caregiver conference.  This year the venue was Washington DC where they welcomed over 130 attendees, the largest conference ever hosted.  This year, for the first time ever, the conference was also streamed live on the web.  Don’t miss the archived footage.

Tim’s MSA Shoe, the comical and iconic symbol for MSA awareness made an appearance at the conference to the delight of the attendees. “The shoe” has made a huge resurgence in popularity in 2014 thanks to the initiative of Philip Fortier who took on the important role of “MSA Shoe Manager”.  His efforts are now ensuring the continued success of this vital MSA awareness symbol which touches hearts everywhere with the important message that laughter is still possible even after an MSA diagnosis.

Rounding out the year comes the news that the US based Autonomic Disorders Consortium has been awarded renewed federal funding of $562,000 for their research programs in MSA and other rare autonomic disorders.

We now have a host of MSA leaders and experts working together on several continents to better organize research and clinical trials.   Finding them sufficient research funding remains a constant challenge but I can say without a doubt I have never felt more hopeful about the prospect of a future treatment or cure for MSA.

All funds donated to Multiple System Atrophy Coalition in our Crowdrise Holiday Challenge will go 100% to MSA research.  The challenge is on until January 6th.  So far we have raised $8500 in this challenge which is still far short of our $30,000 goal.  Your financial support is vital to ensure the momentum for MSA research is maintained through 2015.

Thanks to all who have supported the MSA Coalition, other MSA charities or research programs this year with your personal financial contributions or your local fundraising efforts.

Thanks to everyone who bought MSA Awareness t-shirts, iPhone covers or hoodies in my personal fundraising campaigns this year.  Every single dollar was important and was gratefully received.

Thanks also to those who have worked to raise awareness in your communities and with your political leaders.  We must keep up the momentum and make 2015 an even better year.

Happy Holidays to all!

Warm wishes,

Pam

Pam Bower
pbower@accesscable.net
pam.bower@msaawareness.org
pbower@msacoalition.org

2014-Nov-30

MSA Coalition Announces Year End Fundraising Effort Devoted 100% to Research. DONATE BEFORE JANUARY 6TH!

At the November board of directors meeting the MSA Coalition reviewed their financial situation and agreed that all donations received until January 6, 2015 would be earmarked 100% for research.  They expect to announce the timeline for the next cycle of research grants very soon.

The grant cycle begins with an open call for research grant proposals.  These can come from any researcher located anywhere in the world.  After the cutoff date  proposals are reviewed by the MSA Coalition’s Scientific Advisory Board.  The top ranking projects (those deemed to have the best chance of advancing the field of MSA research towards a treatment or cure) are then recommended for funding.  Last year there were 19 MSA research proposals received from the US, Germany, Austria, Australia and the UK.  7 of these received funding for a total of $274,000.  The remaining projects were all deemed worthy of funding but there were no more funds available.

The need for research funds is urgent and ongoing.  Please consider the MSA Coalition’s research fund in your year end giving.  All donations are tax deductible under the 501 (c) 3 designation.  The MSA Coalition is committed to transparency and provides 990 tax forms downloadable via their website or upon written request.

Checks payable to:

MSA Coalition
9935-D Rea Rd #212
Charlotte, NC
28277

 

2014-Nov-5

Advocacy Working Group presents at Global MSA Research Roadmap Conference

The MSA Coalition and CureMSA were represented on the Advocacy Working Group Panel which presented their recommendations for future advocacy initiatives at the Global MSA Research Roadmap meeting in Las Vegas November 1-2, 2014.  The roadmap meeting was inspired by Chef Kerry Simon who announced in 2013 that he suffered from Multiple System Atrophy.  His organization Fight MSA has raised $500,000 so far to help the MSA cause.

2014-Oct-21

Watch the recorded webcast of the recent  MSA Coalition Patient Caregiver Conference.

http://new.livestream.com/accounts/9435142/events/3471740

Note there are two videos, the bottom video contains:

Morning presentations
8 minute mark: Official opening by Judy Biedenharn, President of the MSA Coalition
14 minutes: Dr Karen Thomas – The Clinical Presentation of MSA
1 hour 11 minutes: Q & A with Dr Thomas
1 hour 46 minutes: Break
2 hour mark: Dr Kamal Chemali and Kevin McNeeley – Autonomic Testing
3 hour mark: Introduction of Board Members – Vera James, Carol Langer, Tom Looney, Larry Kellerman, Cynthia Roemer, Philip Fortier
3 hours 7 minutes: The Story of Tim’s MSA Shoe
3 hours 8 minutes: Thanks to our conference sponsor Lundbeck

The video at the top contains:

Afternoon presentations
1 minute mark: Remarks about the MSA Coalition research grant program by Pam Bower, Co-Chair of the MSA Coalition Research committee
5 minutes: Dr Vik Khurana
50 minutes: Dr Lucy Nordcliffe-Kaufmann
1 hour 6 minutes: Dr Horacio Kaufmann
1 hour 57 minutes: Break
2 hours 18 minutes: Q & A with doctor panel
3 hours 12 minutes: Ending on a positive note!

2014-Aug-19

Our answer to the ice bucket…

Announcing the #MSAPurpleRain Video Challenge

http://www.multiplesystematrophy.org/msa-purple-rain-challenge/

NEWSFLASH: There is an anonymous donor who has pledged to MATCH all donations to the ‪#‎MSAPurpleRain‬ Video Challenge up to a total of $25,000!!! Great way to kick things off!

 

The MSA Purple Rain Challenge (#MSAPurpleRain) is simple:

Oops, don’t forget to turn on your video camera (a smart phone works, too.)

Post your videos on social media sites and use the hash tag:  #MSAPurpleRain

“Let’s Get Crazy” for MSA Awareness and Raise Money, Too!


The MSA Purple Rain Challenge Ask:

Choose to make a video and post it using #MSAPurpleRain – Donate just $10

or

Pass on making a video – We ask for a $100 donation

Details and a DONATE NOW button are here:  http://www.multiplesystematrophy.org/msa-purple-rain-challenge/

 

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RESEARCH NEWS

Latest Research News  – Please see more MSA research news here

2014-Nov-30

On November 1-2, 2014 over 50 MSA researchers met in Las Vegas for the Global MSA Research Roadmap conference.

Dr. Ryan Walsh describes how this event came about and the goals and highlights of the meeting.

Watch Dr. Ryan Walsh here

 

2014-May-09

“Ray of hope” … Professor Gregor Wenning (MSA Coalition Scientific Advisor – below center) has a major role in the new project MultISyn – “Multimodal Imaging of rare Synucleinopathies”. 500,000 Euros were recently awarded by the European Union to his Neurobiology Division at the Medical University of Innsbruck to develop and assess a new PET scan tracer to improve the imaging of alpha-synuclein deposits in patients and thus increase the understanding of Parkinson’s disease and Multiple System Atrophy. The MultISyn project overlaps with the SYMPATH project in that this new imaging method can be used to check whether new therapeutics such as the AFFiRiS vaccine are making an impact.

This article in German is titled “Ray of hope for Parkinson molecular imaging

MultISyn – “multimodal imaging of rare Synucleinopathies’ is a new EU project , which is funded with a total of six million euro since late last year and is on the development and assessment of a new tracer to improve the imaging and thus the understanding of Parkinson’s disease . Prof. Gregor Wenning from the Department of Neurology (Director: Univ.-Prof. Werner Poewe) is heavily involved in the co-ordinated research projects with Tübingen.

Parkinson’s disease is the second most common neurodegenerative disease in Europe after Alzheimer’s dementia. In Austria currently around 16,000 to 30,000 people are living with a Parkinson’s syndrome. The slowly progressive disease of the central nervous system leads to disturbance of movement and often leads to depression. Imaging techniques play a key role in the early diagnosis of the disease, can aid research into their exact cause and be used to develop preventive therapy strategies. “We now know that the deposits in the brains of Parkinson’s patients – mostly consist of so-called Lewy bodies – the protein Alpha-Synuclein. So far, it has not been possible to detect these aggregates and their progression by means of imaging techniques. The EU project MultiSyn aims now, to allow molecular imaging for Parkinson’s disease and to close the gap with Alzheimer’s imaging”, emphasizes Univ.-Prof. Gregor Wenning, head of the Department of Neurobiology, one of eight MultISyn partners.

Search for traces in the brain

Prof. Thomas Gasser, a geneticist at the Hertie Institute for Clinical Brain Research, University Hospital Tübingen is now coordinating the development of a tracer which is able to bind to the protein alpha-synuclein and make the deposits visible. A tracer is a radioactively labelled molecule that is injected and binds in the brain to certain proteins and can be detected by the emitted radiation by means of Positron Emission Tomography (PET). “Two related synucleinopathies – Parkinson’s disease, in which the gene for alpha-synuclein is mutated and multiple system atrophy (MSA ) – a variant of the disease will be studied. Both diseases are particularly aggressive and offer better visibility of the imaging protein deposits when studied together, which is why they offer special potential for new knowledge”, the designated MSA expert Gregor Wenning explained.

Innsbruck neurobiology as a test stage

Finally, the newly developed tracer in the framework of the project will also be used to check two therapeutic approaches. These investigations will take place under the supervision of Prof. Wenning in Innsbruck. “One approach is based on the protein aggregation inhibitor “ANLE 138b”, a second on active immunization, to stimulate the formation of antibodies that help absorb Alpha-Synuclein, in the body”, Prof. Wenning reported. The effect of therapeutic approaches could be seen on PET scan with the tracer.

The Multisyn project is funded by the 7th EU Framework Programme with a total of six million euros , of which over 500,000 euros will go to the neurobiological department of Prof. Wenning. Eight research centres and companies from six countries are involved with leading researchers on the development of tracers, for evaluation of PET/MRI images, as well as for the experimental and clinical research.

Neuroscience research

Neurodegenerative diseases such as Alzheimer’s, Parkinson’s disease, multiple system atrophy, and anxiety disorders are subject of intense research in the framework of the neuro-scientific focus of the Medical University of Innsbruck and the University cross-specialist research area for the study of chronic diseases of the central nervous system (SFB-F44) at the site of Innsbruck. Around the world, as well as at the Innsbruck University Clinic of Neurology, researchers try to identify specific markers for a possible early diagnosis of Parkinson’s syndrome, so to slow the progression of the neurological disease. Under the direction of Prof. Poewe, the researchers of the Innsbruck Neurology in numerous international, multi-center, clinical and epidemiological projects, as well as drug trials are involved.

2014-May-02

RESEARCH UPDATE: Word from Europe is that there will be a Phase I safety trial of the proposed MSA vaccine (from drug company AFFiRiS) in 30 MSA patients in France starting in September 2014. It will take at least one year before results are known. If the safety trial is positive then a larger Phase II trial would be the next step. Only French patients can participate in the safety trial. It’s too soon to say whether a Phase II trial would include patients outside of Europe

2014-Apr-28

Vaccine to be developed and tested for Parkinson’s Disease and Multiple System Atrophy


VIENNA, April 28, 2014 /PRNewswire/ –
An international consortium of top European research teams has received significant EU funding for the development of therapeutic vaccines against Parkinson’s Disease (PD) and Multiple System Atrophy (MSA). Led by the Austrian biotech company AFFiRiS AG, the consortium will use a novel tandem strategy to advance the development of two therapeutic vaccine candidates in parallel. They are both unique in the potential for disease modification, something which is sorely missing in PD as well as in MSA. Both candidates target a protein called alpha-synuclein, which plays a key role in the onset and progression of PD and MSA. Additionally, the group attempts to identify biomarkers with diagnostic and prognostic value. Altogether, the consortium exerts medical and scientific key opinion leaders from Germany, France and Austria. The project SYMPATH has been awarded € 6 Mio. from the 7th Framework Program of the EU and will run for 48 months.

Read more here: http://www.prnewswire.com/news-releases/parkinsons-vaccine—top-experts-unite-in-european-consortium-256973531.html

2014-Apr-17

Global MSA Research Roadmap Meeting Planned for November in Las Vegas

Kerry Simon’s Fight MSA organization is sponsoring a major MSA research Symposium to be held in Las Vegas in November.

Title: Global MSA Research Roadmap Meeting

MSA research experts from around the world are being invited to participate.

Purpose:

• To develop a roadmap for MSA-related research that will provide the framework for therapeutic development from:

o Expanded understanding of molecular pathogenesis

o Expanded preclinical modeling

o Expanded experimental therapeutic targeting of pathologic development and spread

o Expanded understanding of divergence of synucleinopathy v. Parkinson’s Disease

o Expanded understanding of disease phenotypes and outcome measures, including global registry

o Expanded disease-onset, disease-progression, and therapeutic-response biomarkers

o Expanded experimental therapeutic development

• To identify critical needs/barriers to advance MSA research

• To acquaint funding agencies with the need to devote funds to MSA

• To further global coalitions and collaborative efforts to advance research in MSA

• To further attract pharm and biotech to MSA as an area of therapeutic interest and development

o Including as a model disease for neurodegenerative therapeutic development, with potential for broadly applicable outcome markers and therapeutics given MSA’s rapid progression and diffuse symptomatology

o Including the commonality of synuclein between MSA and PD as integral to disease pathology

• To elevate awareness of MSA through publicity, publications surrounding this meeting, and engagement of existing stakeholders for MSA advocacy

Outcomes:

• Global MSA Research Roadmap

• Publication of overall white paper on Roadmap

o Potential for development of segmented publications with increased granularity per Working Group as well

• Identification and rank-ordering of critical next steps in MSA research per working group

o Embed within overall Roadmap

o Identify time to re-convene to review progress/obstacles

• Identify metrics to track progress of/obstacles to Roadmap execution

 

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AWARENESS NEWS

2014-Aug-18

The Ice Bucket Challenge Phenomenon has hit MSAawareness.org!

The ALS Ice Bucket Challenge has inspired some MSA families to also give a shout out to MSAawareness.org as they brave the frigid waters in the name of more awareness for rare and deadly brain diseases.

Those inspired by the ice bucket challenge to donate to help Multiple System Atrophy are requested to give to the Multiple System Atrophy Coalition in the USA or the Multiple System Atrophy Trust in the UK..


2014-Aug-17

Pete Beard has REASON TO LIVE! He’s battling Multiple System Atrophy but that hasn’t stopped him from living his dream to compete in a World Sailing Championship.


Sailing under MSA purple… Australian sailor Pete Beard is DEFYING THE PROGNOSIS of Multiple System Atrophy. Sailing is his REASON TO LIVE and his dream is to win a World Championship Sailing Race. Halifax, Nova Scotia, Canada – August 2014
Follow Pete’s progress here:http://passiontosail.blogspot.ca

 

2014-May-20

Cyclists to Ride from Chicago to Washington, D.C., to Raise Awareness for MSA and Funds for The Multiple System Atrophy Coalition

Riders will ‘Make Their Mark’ to salute their father and brother, who died from Multiple System Atrophy, a rare and terminal neurodegenerative disease.

If you can help out with sponsorship or to volunteer please contact Neil Versel through the official MSA Tour website.

Also remember to “like” their Facebook page at https://www.facebook.com/MakeYourMarkforMSA.

2014-Apr-30

Multiple System Atrophy Film Wins “Fan Favorite” at Neuro Film Festival

The Multiple System Atrophy Coalition announces the debut of “My Hero – An MSA Angel Story,” an inspiring video of courage and love at the Brain Health Fair during the annual American Academy of Neurology in Philadelphia, PA.

2014-Mar-20

MSA Film entered in Neuro Film Festival

“My Hero an MSA Angel Story” by Alix Sun has been entered in the Neuro Film Festival.  This film was made in tribute to her “sweet beautiful mom Valerie Anne Stephanski – March 26, 1936 – July 28, 2012

Winning film will be screened at the American Academy of Neurology conference in Philadephia in April.

Please vote and share – votes close on March 27.

View the film and vote here for: “My Hero an MSA Angel Story”

http://www.americanbrainfoundation.org/go/neurofilmfestival

Film can also be viewed at this facebook link:

https://www.facebook.com/photo.php?v=10203531564315416&set=vb.1403694604&type=2&theater

NOW IN IT’S 5TH YEAR – MARCH IS MULTIPLE SYSTEM ATROPHY AWARENESS MONTH

2014-Feb-25

On February 13, 2010 Bob Summers wrote this post on Miracles for MSA:

“Hello, Susan and I would like to share an idea with all of you 883 Miracle Fans. Why don’t we use the month of March each year as “Multi Systems Awareness Month”. The first day of Spring falls during this month, a time of renewal or rebirth. It seems to be a fitting time of year to reflect and dream big about our role to promote awareness and raise money for the much needed research. There are Fans on this Miracle page from around the world. There is a saying, “little things make big things happen!” This is one positive thing that we can all do together. We could wear purple ribbons or something that is purple which will bring attention to OUR CAUSE! Why purple? Many spring flowers are purple and it’s Sue’s favorite color. Open to suggestions on this.

Please give us some feedback on this idea. Make a comment or hit yes.

If anyone knows if we already have a “Multi Systems Awareness Month” please let us all know.

Thanks and God Bless,

Bob and Susan Summers

The rest, as they say, is history.   Bob and Susan’s idea caught fire and has echoed around the world.  Today there are 5159 fans of the facebook page “Miracles for MSA” which remains as the central rallying point for sparking fundraising activities and encouraging Multiple System Atrophy awareness worldwide.  Major fundraisers are now taking place, city and state governments have issued official proclamations and even signed bills into law in several states officially recognizing this month.  Our network of patients, caregivers, relatives, friends, medical and research professionals has expanded and ties between MSA organizations have deepened.  Collaboration is now the name of the game in awareness, fundraising, advocacy and research.

Thanks to all the MSA organizations around the world who have embraced this month and made it an important part of their annual activities.  Thanks to all the fans and participants of the Facebook and Yahoo pages and groups, you are the reason and the inspiration for all of this.  Thanks to all who work hard to raise funds.  Thanks to all the health advocates and ambassadors spreading the word about MSA and ensuring our legislators have it at the forefront of their agendas.  And thanks so much to all of our MSA research champions who work tirelessly to try to unravel the cause and seek to oneday find the cure.  If we stick together anything is possible.

Believe in the mission… Cure MSA!

http://www.MSAawareness.org

Please sign the petition that has been circulating since 2011

 

Please view the list of  planned March Events

 

MSA Article from the Hamilton Area Dystonia Support Group Newsletter

Bonnie Llewellyn

MARCH 2014

AT OUR JANUARY MEETING:

A woman named Bonnie Llewellyn came to speak to us about a little known condition called Multiple Systems Atrophy (MSA). She has been living with her symptoms for about 5 years.

Unfortunately, it took 4 of those years to get a correct diagnosis.
MSA attacks every body system and breaks it down. The brain continues to function normally. There is no cure &, unfortunately, the prognosis is early death. But Bonnie has already beat her prognosis by 3 years by living as active & positive a life as she can.

Living alone, she has access to greater world with her electric wheelchair & with the help of the DARTS transport system. She has great support from her daughter & granddaughter. Bonnie plays championship darts and travels Ontario & across the border to compete with her team. She bakes, dances, has beers now & then.

She attended our Freedom to Move event last summer & arrived decked in the flashiest Dystonia blue decor, right down to her fingernails, which are always works of art.

There are 4 -6 people of every 100,000 diagnosed with MSA at this time. As it is with many dystonia patients, it is very difficult to find the right doctors & the correct diagnosis.

Bonnie is very fortunate to have Hamilton’s newest Movement Disorder Specialist (Dr. Connolly) as her neurologist.

It has been an honour to count Bonnie as a friend. She is lovely, intelligent & incredibly practical about her journey to come. We have been so very glad to have the opportunity to listen to her story & to ask questions which she answered honestly & bravely.
I look forward to seeing her again, at our Freedom to Walk, next June.
Find Bonnie on Facebook

MEDIA COVERAGE 2014

2014-Mar-17: The Universal Notebook: Becoming Aware of MSA

2014-Mar-14: A $50,000 Research Grant has been awarded  by the Multiple System Atrophy Coalition for “A Stem-Cell Based Therapeutics Platform for MSA”

2014-Mar-05: Guest Post: My Nan and MSA

2014-Mar-03: What’s next for Kerry Simon in his battle against Multiple System Atrophy

2014-Mar-01: Raising awareness of Harleston mum-of-four’s incurable disease

2014-Feb-28: Fundraising success with Fabrily – Tips from MSA Awareness

2014-Feb-28: Chelsea Therapeutics Joins NORD in Promoting Awareness for Rare Disease Day

2014-Feb-20: VIDEO: Bright Side: Dying hair purple to help find a cure

2014-Feb-18: The Multiple System Atrophy Coalition, Other MSA Groups, Rock Stars, and Celebrity Chefs Rally in Support as CHEF SIMON SAYS FIGHT MSA!

2014-Feb-10: Special day overload? It’s a good day to celebrate something, anything, everything

2014-Feb-04: The Multiple System Atrophy Coalition® Awards $219,000 to Fund Five Promising MSA Research Projects

ACTION REQUIRED: Please distribute to your National representatives of Congress and ask for their support of a resolution declaring March as  Multiple System Atrophy Awareness month at the request of Congressman Keith Ellison.  To find out how to contact your member of congress please check this website.

—-
Subject: Dear Colleague
From: “Mandelman, Elizabeth” <Elizabeth.Mandelman@mail.house.gov>
Date: Fri, February 21, 2014 5:34 pm
To: “pam.bower@msaawareness.org” <pam.bower@msaawareness.org>

Hi Pam,

Here is the Dear Colleague that I’m circulating to members of Congress in order to gather support for the MSA Awareness resolution. Please feel free to distribute. The more your members get in touch with their legislators, the more support we’ll gather.

Best,

Liz

Elizabeth Mandelman ▪ Legislative Assistant
Office of Congressman Keith Ellison (MN-05)
2244 Rayburn House Office Building
202.225.4755 ▪ ellison.house.gov

—–

Please distribute to members of congress:

Support March as MSA Awareness Month

Supported by: MSA Awareness

Please join me in supporting the designation of March as Multiple System Atrophy (MSA) Awareness Month by signing onto the MSA Awareness Month resolution.

MSA is a rare neurodegenerative disorder that has no cure. It causes the progressive loss of motor skills, unlabored breathing, speech, and other basic functions, ultimately leading to death. People with MSA typically live only six to ten years after the first signs of symptoms. It affects approximately 4.6 individuals per 100,000 in the United States.

Though little is known about the disease, it is not a black box. According to the National Institute of Neurological Disorders and Stroke at the National Institutes of Health, MSA symptoms are caused by the slow death of nerve cells that control many of the functions that were previously done automatically or with little effort, like breathing or walking. It is possible that the nerve cells die because of an accumulation of a protein in the brain and spinal cord called alpha-synuclein. Alpha-synuclein accumulation is also thought to play a role in other neurological diseases like Parkinson’s disease. This important but basic knowledge is not enough.

The first step in accelerating research into MSA’s causes, potential treatments, and a cure is to raise public awareness. To ask any questions or to sign onto the resolution, please contact Elizabeth Mandelman on my staff at Elizabeth.mandelman@mail.house.gov.

Sincerely,
Keith Ellison
———————–

Expressing support for designation of March 2014 as “Multiple System Atrophy Awareness Month” to increase public awareness of this progressive neurodegenerative disorder that affects the autonomic functions of the body.

Whereas Multiple System Atrophy is a fatal neurological disease diagnosed in approximately 15,000 patients in the United States;

Whereas as many as 35,000 more patients in the United States with Multiple System Atrophy are misdiagnosed with other more recognizable neurodegenerative disorders;

Whereas patients with Multiple System Atrophy lose the ability to walk, talk, chew, swallow, and even breathe over the course of a few years;

Whereas the incidence of Multiple System Atrophy in the United States has increased in recent years;

Whereas no specific risk factors or causes of Multiple System Atrophy have been identified;

Whereas there is currently no cure for Multiple System Atrophy;

Whereas the lack of awareness about Multiple System Atrophy has hindered research and the ability of researchers to obtain funding for their work;

Whereas public support and greater awareness of the need for research funding can aid in the discovery of the cause of and a cure for Multiple System Atrophy; and

Whereas March 2014 would be an appropriate month to designate as “Multiple System Atrophy Awareness Month”:
Now, therefore, be it Resolved, That the House of Representatives supports the designation of “Multiple System Atrophy Awareness Month” to increase public awareness of this progressive neurodegenerative disorder that affects the autonomic functions of the body.

 

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MSA 101: Basic MSA information to know

For a very good overview of MSA please watch the video presentation by Dr. Kathleen Poston

For the newly diagnosed or those still seeking a diagnosis these articles should be read and shared with your doctors.

1. Top 10 things to know about Multiple System Atrophy.  Written with input from the collective experiences of MSA patients and caregivers who have participated in the online shydrager Yahoo support group since 1995.  This list touches on many things not normally highlighted in medical literature about MSA.

2.  Second Consensus Statement on the Diagnosis of Multiple System  Atrophy.  This was written in 2007 by a group of the world’s expert clinicians and researchers.  This is the correct and most up to date definition of Multiple System Atrophy… accept no other!

3.  Multiple System Atrophy The Nature of the Beast by Professor Niall Quinn.  This was written in 1998 by one of the world’s leading experts on the disease.

4. I nicknamed this article “The MSA Bible” because of it’s length and in depth description of MSA, it includes a very good description  of treatment options available for many of the most troubling symptoms. Unlike the bible this article is updated regularly as new information is discovered about MSA.

5. Progressive Late-Onset Cerebellar Ataxia.  Very good review of all tests that are available to rule out various causes of cerebellar ataxia. “In patients over the age of 50, a rapidly progressive disease course should prompt reevaluation for Multiple System Atrophy”.

 

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Celebrity spokesperson for MSA emerges

Feb 2, 2014

Celebrity chef  Kerry Simon of Las Vegas first revealed last December that he is suffering with Multiple System Atrophy.  Chef Simon is best known for his appearances on the Iron Chef TV series and by his nickname the “Rock N Roll Chef”.   His many celebrity friends have pledged their support in an upcoming fundraiser benefiting Multiple System Atrophy Research.  Chef Simon has also launched an awareness campaign “Simon Says Fight MSA”.

Please watch this space for the latest news and media links.

 

2014-Mar-03: What’s next for Kerry Simon in his battle against Multiple System Atrophy

2014-Feb-28: ‘Barry’ Simon’s grandiose MSA charity event boosted by Bill’s Murray-ment

2014-Feb-27: Official Kerry Simon Fundraising Event Flyer

2014-Feb-25: Kerry Simon: What I’ve Learned

2014-Feb-23: Kerry Simon’s intensive rehab program is the walk of his life

2014-Feb-19: VIDEO: Chef Kerry Simon opens up about Multiple System Atrophy

2014-Feb-19: Kerry Simon hosts charitable Rock ‘n Roll Cocktail Party

2014-Feb-13: Behold the Entire Lineup for Simon Says Fight MSA

2014-Feb-12: A Chef, His Brigade and the Indomitable Next Course

2014-Feb-06: Celebrity friends rally around ailing chef Kerry Simon

2014-Jan-29: VIDEO: Kerry Simon appears on MyNews3 Las Vegas

2013-Dec-13: Chef Kerry Simon Battling aggressive form of Parkinson’s

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Announcing the Don Summers’ Memorial Multiple System Atrophy Travel Award

October 1, 2013

Since 2004 the MSA Coalition, formerly the Shy Drager Syndrome/Multiple System Atrophy Support Group, has funded an annual MSA Research Award to the most outstanding abstract submitted to the American Autonomic Society research meeting.

This award has been renamed to honor past president Don Summers who will be remembered for his pioneering work to spread awareness and support MSA families.

Read more about the award and the past recipients.

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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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