Multiple System Atrophy Awareness

Spreading awareness worldwide

MSA Film entered in Neuro Film Festival – Please Vote

2014-Mar-20

“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.

 

Add a comment

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

Add a comment

RESEARCH NEWS

Latest Research News  – Please see more MSA research news here

2014-Mar-05

London MSA Research Conference 2014

On Feb 27th a MSA Research Conference was held in London UK in the Lecture Theatre, Clinical Neuroscience Centre, 33 Queen Square

The meeting brought together researchers and clinicians with an interest in MSA to discuss current research, clinical management and future directions in MSA. The target audience was neurologists, researchers and students.

View the complete program here: 2nd UK MSA Research Meeting

MSA Advocate Pam Bower (MSA Awareness Canada / MSA Coalition USA)  attended and met with Prof  Gregor Wenning and members of the staff of the MSA Trust UK.


Some selected presentations of the meeting are available for viewing:

Dr. Nadia Magdalinou – Cerebrospinal Fluid studies in MSA

Prof. David Burn – Registries, databases and the role of clinical Networks

Dr. Helen Ling – Clinical Aspects of MSA: What can we learn from the other atypical parkinsonian syndromes

2014-Mar-05

CLINICAL TRIALS for Multiple System Atrophy

FRANCE

Oligomeric Alpha-synuclein in Multiple System Atrophy (BIOAMS)

Investigation of the Serotoninergic System in Multiple System Atrophy: a Positron Emission Tomography (PET) Study (SEROTAMS)

Efficacy of L-threo DOPS on Orthostatic Hypotension Symptoms and Other Non-motor Symptoms in Patients With MSA (DOPS-AMS)

Post-prandial Hypotension and Sleepiness in Parkinson’s Disease and Other Synucleinopathies (HYPOSOMNPARK)

GERMANY

Progression Rate of MSA Under EGCG Supplementation as Anti-Aggregation-Approach (PROMESA)

TAIWAN

Diagnosis of Parkinson’s Disease Using Diffusion Magnetic Resonance Imaging

USA

Florida:

Maryland:

Evaluation of Primary Chronic Autonomic Failure

Massachusetts:

Treatment of Parkinson Disease and Multiple System Atrophy Using Intranasal Insulin.

Michigan:

PET Imaging Study of Neurochemical and Autonomic Disorders in Multiple System Atrophy (MSA)

Minnesota:

Droxidopa / Pyridostigmine in Orthostatic Hypotension

New York:

A Clinical Study of Patients With Symptomatic NOH to Assess Sustained Effects of Droxidopa Therapy

The Phenotype and Natural History of Primary Autonomic Disorders

North Carolina:

A Clinical Study of Patients With Symptomatic NOH to Assess Sustained Effects of Droxidopa Therapy

Pennsylvania:

Identifying Biomarkers of Parkinson’s Disease Using Magnetic Resonance Imaging (MRI)

Tennessee:

Contribution of Angiotensin II to Supine Hypertension in Autonomic Failure

The Role of Endothelin in the Supine Hypertension of Autonomic Failure

Magnetic Resonance Spectroscopy in Autonomic Failure

Treatment of Supine Hypertension in Autonomic Failure

The Autonomic Nervous System and Obesity

Wisconsin:

A Clinical Study of Patients With Symptomatic NOH to Assess Sustained Effects of Droxidopa Therapy

 

Mayo Clinic Stem Cell Study info

2014-Mar-01

Mayo Clinic is currently undertaking a small phase I safety/tolerance study on mesenchymal stem cells (MSC) in MSA. This study is based on the premise that there is a deficiency of growth factors in MSA. MSC are transformed from lipocytes from the patient and is injected intrathecally (into the spinal fluid) to bypass the blood-brain barrier. The study is funded currently by seed money from Mayo Clinic and the Kathy Shih Memorial Foundation for Multiple System Atrophy. There are stringent inclusion/exclusion criteria and arduous testing with multiple spinal taps and imaging studies that mandate several weeks in Rochester, Minnesota.

Because of these stringent requirements, they have only accepted Mayo patients as candidates. Even then, however, they had to screen out over 80% of patients for various reasons (mostly late disease state). Should the results show promise, a formal treatment trial may occur, at which time they maybe able to serve many more patients in a multicenter study.

You can contact the Mayo Clinic Rochester Minnesota to inquire about this trial: http://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient

2014-Feb-04

The Multiple System Atrophy Coalition® Awards $219,000 to Fund Five Promising MSA Research Projects

The Multiple System Atrophy Coalition Board of Directors has voted to award $219,000 in research grants to fund five MSA research projects, with funds being distributed in the first quarter of 2014. In 2013, the MSA Coalition® established an MSA Research Grant Program and a world-class scientific advisory board to review and rank research applications

Read the full press release here

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

Add a comment

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.  A brief review of Multiple System Atrophy by Professor Niall Quinn.  This was written in 2012 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”.

 

Add a comment

Update: World Multiple System Atrophy Day

October 6, 2013

On World MSA Day (October 3rd) participants around the world are encouraged to walk a mile and light a candle in honor of their loved one with MSA.  The miles will be tallied soon and our total distance calculated, the goal being to collectively walk around the world, nearly 25,000 miles.

The results of the tally though are not nearly as important as seeing the interest and enthusiasm grow as people from all countries come together on this day in person and through the sharing of their photos on facebook.


 

Growing momentum for World MSA Day 2013 can be seen in the statistics from the Miracles for MSA facebook page. 35,000 people were reached during the week leading up to World MSA Day spreading awareness of this devastating neurodegenerative disease and making this year’s event a huge success!

 

counter

Add a comment