May 20, 2013
The Multiple System Atrophy Coalition launches its new MSA Research Grant program, including the creation of a world-class Scientific Advisory Board and Advocate Research Committee to review research proposals and recommend grants.
Appointed to the Scientific Advisory Board are:
- Tom Chelimsky, MD; Professor and Chair, Neurology; Medical College of Wisconsin
- Phillip Low, MD; Professor of Neurology: Mayo Clinic
- David Robertson, MD; Professor of Neurology, Vanderbilt University Medical Center
- Steven Vernino, MD, PhD; Professor of Neurology & Neurotherapeutics; UT Southwestern Medical Center
- Professor Gregor Wenning, MD, PhD, MSC; Division of Neurobiology, University of Innsbruck
PRESS RELEASE: Multiple System Atrophy Coalition Research Grant Program Announced
VIEW THE VIDEO
May 10, 2013
Researchers at Georgetown University Medical Center have used tiny doses of a leukemia drug to halt accumulation of toxic proteins linked to Parkinson’s disease in the brains of mice. This finding provides the basis to plan a clinical trial in humans to study the effects.
Professor Charbel Moussa is planning a phase II clinical trial in participants who have been diagnosed with disorders that feature build-up of alpha Synuclein, including Lewy body dementia, Parkinson’s disease, progressive supranuclear palsy (PSP) and multiple system atrophy (MSA).
PRESS RELEASE: Cancer Drug Prevents Buildup of Toxic Brain Protein
ARTICLE: Cancer Drug Prevents Buildup of Toxic Brain Protein
May 6, 2013
A major donation came in over the weekend to top up the MSA Coalition Research Fund to over $100,000. Money will be granted to MSA researchers out of this fund by the end of 2013.
If you aren’t familiar with the MSA Coalition and their work please read these links.
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
By credit card or by Paypal on their website
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
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
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.
April 22, 2013
The SDS/MSA Support Group Officially Changes Name to The Multiple System Atrophy Coalition
April 19, 2013
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). “
April 19, 2013
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.
March 28, 2013
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!
In recognition of multiple system atrophy awareness month, The MSA Coalition is sponsoring a national letter-writing day on March 28, 2013 to bring awareness to members of Congress issues that are important to this rare disease community. Find out how to participate.
Note: This page is still available even after March 28th so keep sending in your letters.
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.”
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.
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.
3. Cynthia Roemer (MSA New Jersey) has prepared this page with tips to guide you in getting MSA Awareness Month proclamations from government officials.
Miracles for MSA request public support in spreading the word about this rare and fatal neurological disease and the desperate need for research. Time is running out for those currently diagnosed.
FOR IMMEDIATE RELEASE
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 email@example.com 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 ~~~~~~~~
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!