If you aren’t familiar with the MSA Coalition and their work please read these links.

http://www.prweb.com/releases/2013/4/prweb10647895.htm

http://www.shy-drager.org/MSA-research-grants#sthash.hAh2Kw2Y.dpbs

Help boost the amount available in the MSA Coalition Research Fund so more money reaches the hands of researchers this year.

Ask friends and family to donate to the MSA Coalition. They can donate a number of ways.

By Check payable to:

Multiple System Atrophy Coalition
8311 Brier Creek Pkwy, St 105-434
Raleigh, NC
27617

By credit card or by Paypal on their website
http://www.multiplesystematrophy.org/
Click on DONATE button at the top of the page

By credit card via one of the existing Firstgiving fundraiser pages where money raised goes to the MSA Coalition.
Note: Firstgiving is a fundraising platform and so is the intermediary who handles the money. http://www.firstgiving.com/89428/fundraisers

You may get a much better response from family and friends if you set up your own fundraising page on Firstgiving and tell your own personal story and include photo or video of your loved one with MSA.

Here is one example of a personal fundraiser page
http://www.firstgiving.com/fundraiser/pambower/pambowersfundraisingpage

To set up your own fundraiser page on Firstgiving with proceeds going to the MSA Coalition go to this page and click on START FUNDRAISING
http://www.firstgiving.com/89428

As a 501(c)3 all donations to the MSA Coalition are fully tax deductible to residents of the United States.

WHO ARE THE MULTIPLE SYSTEM ATROPHY COALITION?

The Multiple System Atrophy Coalition has existed since 1989 and has been devoted to raising awareness about Multiple System Atrophy since then. Every year they hold an annual conference in a different city in the US with an evening social hour on the first night followed by a day long series of presentations from MSA researchers and other health professionals. They also provide snacks, breakfast and lunch, all free of charge. It’s run by volunteers who live in various parts of the US.

Board members:  Don Crouse lives in North Carolina, he handles the donations. Vera James lives in California, she answers the toll free hot line (1-866-737-5999 from US and Canada) and offers support and comfort to families. Judy Biedenharn lives in Ohio, she organizes the annual conference.  Dr Tom Chelimsky lives in Wisconsin, he will be the hosting physician for the Sep 6-7 conference to be held this year in Milwaukee and will also be organizing an educational session for doctors to learn about MSA.  Dr David Robertson lives in Nashville, Tennessee and is recognized as an expert on Multiple System Atrophy.  Don Summers is the past president who is now in ill health and so no longer is able to participate, he lives in Austin, Texas. This group is like extended family for the many patients and caregivers who have been helped by them over the years.

The SDS/MSA Support Group Officially Changes Name to The Multiple System Atrophy Coalition

See: http://www.prweb.com/releases/2013/4/prweb10647895.htm

Update on Stem Cell Study
by Philip Low, MD
Mayo Clinic, Rochester, MN

“The Mayo stem cell study has started. We have a series of subjects enrolled. The first subject has donated a fat aspirate, which is being transformed into mesenchymal stem cell. Plan to infuse in about a month.

There is significant progress in understanding how the disease develops (pathogenesis). The argument is that if we can decompose the process into a number of steps, it gives us greater opportunities to intervene. We know that alpha-synuclein evolves into a misfolded protein, which forms a nucleus for growth of abnormal aggregated protein (nucleation). This protein can leave the cell and infect healthy cells (prion-like spread). “

Status of Rifampicin Treatment Trial

by Philip Low, MD

Mayo Clinic, Rochester, MN

The following summary is provided for persons interested in our Rifampicin double-blind treatment trial of MSA. The study has been completed. The study was highly successful from the design and implementation perspectives. We fully recruited 100 subjects within 12 months of commencing the study in April 2011. The study blind was highly efficient and number of dropouts was modest (a tribute to our study participants). The study underwent planned interim analysis after 30 subjects had completed 12 months of treatment. The study has now undergone full and final analysis. The study demonstrated that rifampicin was a safe drug taken under the careful monitoring conditions of the study. Unfortunately the study was completely negative. It failed to demonstrate improvement in MSA or show trends of improvement. We therefore do not recommend treatment of MSA with Rifampicin.

The use of this logo is restricted.  Please contact Pam.Bower@msaawareness.org for permission to use.

An article about living with MSA by Gary Rose appears in the March/April issue of CurePSP’s newsletter

March 28, 2013

From Vera James:  Coming to the end of March Awareness and before it does end I want to give my thanks to Don Summers.   He has been there for so many of the patients/caregivers giving his knowledge so that they could understand MSA and not feel so alone.    He did this since the 90′s when he led the SDS/MSA Support Group, until he stepped down a few years ago because of his own health issues.   He is a true warrior for MSA!    If anyone wants to send Don Summers a card or letter,  they can mail it to:  Don Summers P.O.Box 279 Coupland, TX 78615

March 28, 2013

March 28 is National Multiple System Atrophy letter writing day!

March 27, 2013

BLOG: MSA A Daughter’s View by Angelina Cervone

March 26, 2013

Walk raises more than $8000 for MSA

March 26, 2013

News from Vera James:   She received a letter from Senator Fienstein (CA) regarding MSA.   Part of the post:

“You may be pleased to know that on March 4, 2013, California State Senator Bill Emmerson introduced California State Senate Concurrent Resolution 21, which would designate March 2013 as MSA awareness month.   California State Senate Concurrent Resolution 21 passed the California State Senate on March 18, 2013.   It is currently being considered in the California State Assembly.”   View the wording of Resolution SCR 21

March 25, 2013

From Vera James: Just received my flag and the certify note that the flag was flown over US Capitol on March 1, 2013 at the request of the Honorable Edward R.Royce Member of Congress and the MSA Coalition for Multiple System Atrophy March Awareness

March 25, 2013

VIDEO: Sharon and Eric Sutton are interviewed about Multiple System Atrophy

March 24, 2013

Blog: MSA Awareness Month Part 2 by Frank Cervone

March 22, 2013

MSA patient Tim Burden was featured on the DIY Network show “Rescue My Renovation”.   The show will be repeated several times in March and April.   View the listing.

March 21, 2013

Reported by Philip Fortier

MICHIGAN RESOLUTION PASSED….

Michigan Representative Sarah Roberts (D-18) called me yesterday to tell me that on a verbal vote, her resolution declaring March as Multiple System Atrophy Awareness Month passed…. I am awaiting the actual language of the resolution and we will have a photo op with the resolution and the representative in the coming days… Will post all details here….. YAY – Add Michigan to the List….

March 20, 2013

Blog: Multiple System Atrophy Awareness Month by Frank Cervone

March 18, 2013

From Olga Korbut: “I lost a great friend to MSA. Please read if you like my sport. A couple of years ago I was watching ESPN and saw he passed away.”

Olga Korbut joins the fight against MSA – Article from MSA News – Multiple System Atrophy Trust

March 15, 2013

VIDEO: Family shares man’s experience with Multiple System Atrophy

March 14, 2013

There have been 5000 unique views of our press release announcing March as Multiple System Atrophy Awareness Month.  Please continue to share this link  http://prlog.org/12062758

March 13, 2013

Note from WDKN 1260 AM Country Gospel Talk Radio: “Due to numerous requests from around the world, WDKN will rebroadcast the Power Lunch interview with Bob Summers and Mona Law on Multiple System Atrophy Awareness Month at 11:30 am US CDT on Friday, March 15. The broadcast on this rare fatal neurological disorder has generated more response than any program in the four-year history of the Power Lunch and drew comments from South Africa, Sweden, England, Minnesota, Kentucky, Texas, Michigan and elsewhere from online listeners.”

Go to this link to listen to the program on Friday, March 15 at 12:30 PM Eastern time  = 4:30 PM GMT

March 12, 2013

VIDEO: State of Pennsylvania passes house resolution designating March as Multiple System Atrophy Awareness Month.  Thanks to Tommy Fitzgerald for working with state representatives to achieve this success.  View the video.

March 11, 2013

Reported by Tommy Fitzgerald: “Tomorrow I will be going to Harrisburg, PA in order to observe The Pennsylvania State Representative’s vote on designating March, MSA Awareness month. This is a resolution designed to create awareness to the orphan disease Multiple System Atrophy (MSA). I am presently diagnosed with MSA, and research into this incurable, progressive disease is my only hope. I worked on this project personally, along with PA State Representative Keith Gillespie, to bring the disease and it’s symptoms to the forefront of the general public. It is my understanding that they will be televising the event after 11:00 AM on Tuesday March 12, 2013 on the PCN Network in PA, and on http://pcntv.com/ “

March 8, 2013

From the MSA Coalition: Rex Griswold, an MSA patient has generously requested that his company (Nestle Waters) donate to the MSA Coalition. As a result, The MSA Coalition was selected as the beneficiary of the 2013 CARRE Foundation fundraising event in honor of Rex Griswold of Nestlé Waters North America and Tom Gillard, formerly of Tropicana, QTG and MetRx. The proceeds donated by members of the CARRE Foundation will be donated to the MSA Coalition Research Fund.

Dr. David Robertson describes the disease and the need for research as Rex Griswold shares his personal story battling Multiple System Atrophy.   View the VIDEO

March 8, 2013

VIDEO: Woman’s post raises MSA awareness

March 8, 2013

WEBCAST REMINDER: Listen to Bob Summers discuss MSA LIVE online Friday, March 8th 12:30pm Eastern 5:30PM UTC/GMT Go to this link to listen to the webcast

NOTE: This interview will be replayed on Friday, March 15 12:30 PM Eastern time  = 4:30 PM GMT

Go to this link to listen to the program

March 6, 2013

Reported by Hugh Hogan:  “The Alabama Senate has passed a declaration making March MSA month. I worked with State Senator Gerald Dial on this thank you sir!!”

March 5, 2013

8000 Nigerians May Be Suffering from MSA

March 5, 2013

VIDEO: 12 year old girl, Logan Gable appears on TV interview with her grandmother who suffers from Multiple System Atrophy

View the video

March 5, 2013

Cervone continues to raise awareness

March 3, 2013

March 1, 2013

Reported by Don Crouse, board member of the Multiple System Atrophy Coalition:  “Good news! We received confirmation a few minutes ago from Senator Richard Burr that a flag is being raised over the US Capital today in recognition of Multiple System Atrophy Awareness Month! The Coalition will receive the flag in about two weeks and plans to use it to continue creating awareness for MSA.”

February 28, 2013

VIDEO: Sharon Sutton gives a wonderful speech about Multiple System Atrophy on Rare Disease Day

February 18, 2013

Indiana Senate passes resolution designating March as “Multiple System Atrophy Awareness Month”

Full Video available of the vote on Arkansas bill HR1005

February 15, 2013

House passes resolution to designate the month of March as “Multiple System Atrophy Awareness Month.”

— Arkansas House (@ArkansasHouse) February 15, 2013

1. Reported by Stacy Jenkins Cowart: “Arkansas passed a resolution today officially declaring March MSA Awareness month.” VIEW VIDEO

2. Reported by Charmayne Bischel: “MSA bill is being proposed in the state of Oregon” View the wording of the bill

February 13, 2013

1. There have been nearly 3000 hits on the online link to our press release… please keep sharing this link and if possible write your own press release using this as a model and send to local press.

http://www.prlog.org/12062758-march-is-multiple-system-atrophy-awareness-month.html

2. The Parkinson’s Disease Foundation has written expressing their support of MSA Awareness Month. They have offered up these tips for getting greater awareness on a local level in dealing with media.

http://www.pdf.org/en/parkinson_awareness_spread#media

3.  Cynthia Roemer (MSA New Jersey) has prepared this page with tips to guide you in getting MSA Awareness Month proclamations from government officials.

http://www.msanj.org/march-awareness-month-effort/

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

March is Multiple System Atrophy Awareness Month

Miracles for MSA awareness bracelet

PRLog (Press Release) – Feb. 5, 2013 – This March marks the 4th annual Multiple System Atrophy Awareness Month. Miracles for MSA urgently request public support to create greater awareness of the need for research funding to aid in discovering the cause and cure of this fatal neurological disease.

“Multiple system atrophy (MSA) is a rare disease with approximately 15,000 diagnosed patients in the US at any given time”, says Don Crouse, board member of the MSA Coalition. “As many as 35,000 more are misdiagnosed with another disorder”.

MSA results in the degeneration of nerve cells in several regions of the brain that affect abilities most people take for granted.  Initial symptoms may include loss of balance, fainting due to severely low blood pressure, bladder and bowel issues, speech and swallowing difficulties, sleep disturbances, breathing problems, rigidity and tremors.  These symptoms often lead to a misdiagnosis as Parkinson Disease.

“A few years back MSA sneaked into my life and began stealing things”, says Bill Sydnor.  “At first I barely noticed that my fine motor skills went missing and then my coordination was gone.  Before long, my career as a Special Education Teacher was lost and my home was taken.”

Over the course of 5 to 10 years, victims are robbed of their ability to walk, talk, chew, swallow and breathe.  There are no medications available to stop its relentless progression.

“Being diagnosed at 38 years old destroyed my life as I knew it”, says Samantha Crawford. “I can no longer walk, my speech is slurred, I have difficulty swallowing, my bladder doesn’t work and I take 28 tablets a day.  There isn’t an aspect of your life that MSA doesn’t affect, it takes away your femininity, your pride – it takes away you.”

Research Funding Desperately Needed

Because of the rarity of Multiple System Atrophy, research experts around the world are having a difficult time finding funding for their urgently needed work. “As far as we know, there are no celebrities that are affected by Multiple System Atrophy, this means as members of the MSA community we need to raise money and create awareness at a grass-roots level”, says Don Crouse.

Dr. Charles Ide, researching MSA at the University of Western Michigan, elaborates on the problem, “It’s amazing how many applications for NIH grants I have written over the past 5 years all to no avail.  Most of these get good reviews to the point that you expect funding, but for some reason, none is allotted. MSA is still an orphan disease and does not make it to their top funding tier.”

The reality is that patients and their families are left feeling abandoned by the government, the medical establishment and by various support organizations that focus on MSA’s more recognizable neurodegenerative cousin diseases like Parkinson Disease or Alzheimer’s.  As well, in order to direct funds to the most relevant MSA research there needs to be more of a concerted effort globally to collect and distribute money to those researchers on the cutting edge. In the US, the Multiple System Atrophy Coalition is taking a leadership role to advocate for changes at the NIH to increase funding of orphan diseases like MSA.

The amount of money required to make a difference to current sufferers is not out of reach. Professor Gregor Wenning, co-founder of the European MSA Study group, a research network of 24 clinical centers in Europe believes, “Even 1 million USD could make a difference, although this is a small fraction of what is available or donated for other orphan diseases such as Lou Gehrig’s disease or Huntington’s disease (see Cure HD Initiative, CHDI).  Essentially a breakthrough in MSA therapies requires exceptional ideas but also money.”

For more information and worldwide resources on Multiple System Atrophy please see the MSA Awareness website

Professor Gregor Wenning is available for media interviews, please contact pbower@accesscable.net to arrange.

Professor Wenning’s latest scientific paper was just published in the Lancet journal “The natural history of multiple system atrophy: A prospective European cohort study“. This paper is being called “A milestone on the way to therapy for MSA”

Professor Wenning is an invited speaker at the upcoming International Conference on Alpha-Synuclein in Parkinson’s Disease & Related Neurodegenerative Diseases: From Mechanisms to Therapeutic Strategies to be held in Dubai March 1-3, 2013

# # #

Miracles for MSA is the hub of a global online network uniting MSA patients, family, support organizations and medical researchers.  The goal, along with sister website MSAawareness.org is to forge connections worldwide, share information and support resources and encourage fundraising for research.

Bill Sydnor resides in Fort Lauderdale, Florida and blogs on his facebook page “Living Day by Day with MSA”.

Samantha Crawford resides in Falkirk, Scotland with husband Andy and daughter Rhianna.  She and her family write a weekly MSA blog and fundraise for the Multiple System Atrophy Trust

The Multiple System Atrophy Coalition (shy-drager.org) was established in 1989 by Dorothy Trainer-Kingsbury whose husband suffered from the disease, and Dr. David Robertson, Vanderbilt University, Nashville, TN

The European MSA Study Group (EMSA, emsa-sg.org) was established in 1999 by Professors Werner Poewe and Gregor K. Wenning at the Medical University of Innsbruck, Austria. EMSA-SG represents a consortium of scientific investigators from 24 research centers committed to clinical trial activity and other research studies aimed at finding the cause and a cure for MSA. EMSA maintains a global collaboration with the North American MSA (NAMSA), the Japanese MSA (JAMSA), the Chinese MSA (SAMSA) and the Panamerican MSA (PAMSA) Study Groups.

~~~~~~~End of Press Release ~~~~~~~~
COMMENTS:

TO INDIVIDUALS HOPING TO RAISE MORE AWARENESS IN YOUR COMMUNITY:  Please make use of this FREE sample Press Release above announcing MSA Awareness month and send it out to your local media. You can download a copy in word format from    http://www.msaawareness.org/wordpress/wp-content/uploads/2013/02/MSA-Awareness-2013-5th-draft.doc

Please remember to change the following details before you send it out:

1. Include your name and contact information

2. Include your location

3. Feel free to replace any of the quotes from patients and caregivers and include your own quotes.

4. If you have contact with MSA researchers or doctors in your local area be sure to ask them for a quote about MSA to include. If you don’t have a medical contact feel free to keep the quotes we included this year from the medical/research community.

5. Please leave the links to Miracles for MSA and MSAawareness.org because we want to reach everyone affected by MSA and have them join us here to make our voices even louder next year.

6. Please remember to include links and a description about your local MSA organization so that your organization will also be highlighted.

7. You may also wish to highlight another facebook group or other online group, please feel welcome to do so.

Together we can make Miracles happen for MSA!

TO ORGANIZATIONS SUPPORTING MSA PATIENTS: We would like to encourage all MSA supporting organizations worldwide to send out a press release announcing March as Multiple System Atrophy Awareness Month.

Please feel free to make use of this free sample Press Release above announcing MSA Awareness month and change it to suit your organization and include quotes from patients, caregivers and researchers in your country. You can download a copy in word format from  http://www.msaawareness.org/wordpress/wp-content/uploads/2013/02/MSA-Awareness-2013-5th-draft.doc
We do ask that along with including links and information about your MSA organization that you also include the links to the grassroots MSA websites Miracles for MSA and MSAawareness.org because we want to reach everyone affected by MSA and have them join us here to make our voices even louder next year. Neither of these sites is affiliated with a charity or for-profit. They represent people affected by MSA from many countries who want to spread awareness and encourage collaboration and perhaps one day a cure.  Together we can make Miracles happen for MSA! Thank you!

March is fast approaching.  Send in your event announcements to pbower@accesscable.net

View list of planned events

Please “Like” our sister facebook pages to show your support and get involved to share  ideas and be inspired.

Miracles for MSA:

MSA Awareness Month:

Do you need promotional items like MSA Awareness bracelets or t-shirts?

Check out the available MSA Awareness Items

January 8, 2013

Olympic Champion gymnast Olga Korbut lost her friend and team mate Nikolai Andrianov to MSA in 2011.   She posted this message on her facebook page: