MSA Advocate Pam Bower wins WeGo Health Activist award “Best in Show: Facebook”
NOW IN IT’S 5TH YEAR – MARCH IS MULTIPLE SYSTEM ATROPHY AWARENESS MONTH
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!
Click to see more archived MSA research news here
New Clinical Trial Seeking Multiple System Atrophy Patients
AstraZeneca plans to conduct a Phase 2 clinical trial with AZD3241, a potent, selective, brain-permeable MPO inhibitor. The study, entitled “A 12-Week, Multicenter, Randomized, Parallel-Group Study to Assess the Safety, Tolerability, Pharmacokinetics, Biomarker Effects, Efficacy, and Effect on Microglia Activation, as Measured by Positron Emission Tomography, of AZD3241 in Subjects with Multiple System Atrophy” is anticipated to start in the first half of this year. The study is double-blind and placebo-controlled, and will investigate two dosage levels of AZD3241. The study will be conducted at sites in the United States and Europe. Future studies are planned, including a study of longer duration focusing on safety and efficacy.
If you’d like more information on this study please read the informational flyer and share with your doctor.
For the latest updates please check the listing for this trial at ClinicalTrials.gov
The Multiple System Atrophy Coalition, in partnership with CurePSP and the Blandford Rees Foundation, requests grant applications for research relevant to the cure, cause, prevention, improved treatment, diagnosis and/or understanding of Multiple System Atrophy. Seed grants of up to $50,000 each are available. All applications must be submitted to The MSA Coalition via email by March 9, 2015. Please contact Pam for full details and application form. email@example.com
Europeans continue to lead the way for Multiple System Atrophy research offering more hope through large collaborative projects studying multiple potential therapies. Latest MSA project ARTEMIS receives grant of 740,000 Euros!
Two additional European projects are already underway working on ways to detect and counteract alpha-synclein aggregation. MultiSyn and Sympath
The ARTEMIS project “Targeting Alpha-Synuclein for Treating Multiple System Atrophy” has been awarded 740,000 Euros in research grant funding by the European funding program E-Rare.
This new collaborative project brings together academic partners with strong expertise in multiple system atrophy and industrial partners with innovative therapeutic candidates. This unique combination at the European level will allow for a rapid translation of successful strategies into clinical trials.
Academic partners Wassilos Meissner from the University of Bordeaux, Bordeaux, France, Armin Giese from Ludwig-Maximilians-University, Munich, Germany and Gregor Wenning from Innsbruck Medical University, Innsbruck, Austria will combine forces to work with drug companies Affiris based in Vienna, Austria and MODAG based in Wendelsheim, Germany to test four potential therapies for Multiple System Atrophy.
Multiple System Atrophy is a fatal disorder with severe motor impairment and dysautonomia affecting over 30,000 people in Europe. Accumulation of alpha-synuclein in oligodendrocytes plays a pivotal role, leading to glial and neuronal dysfunction and degeneration. These features are recapitulated in the PLP-SYN mouse model expressing alpha-synuclein in oligodendrocytes.
This project aims at counteracting disease progression by targeting key mechanisms contributing to alpha-synuclein accumulation. Using complementary in-vitro and in-vivo models, they will test the efficacy of:
1) increasing alpha-synuclein clearance by activating autophagy with rapamycin
2) reducing seeding of aggregation by preventing its cleavage with VX-765
3) reducing alpha-synuclein aggregation using the oligomer inhibitor anle138b
4) preventing alpha-synuclein propagation via immunotherapy using AFFITOPE®.
Finally, they will test the combination of the most promising strategies to obtain synergistic therapeutic effect.
Efficacy readouts will include oxidative stress, unfolded protein response (in-vitro), cell survival, monomeric, oligomeric and post-translational modifications of alpha-synuclein (in-vitro and in-vivo), astroglial and microglial activation, as well as motor deficits (in-vivo).
Funding transnational collaborative research through joint transnational calls is one of the major objectives of E-Rare. This is the most important and effective joint activity to enhance the cooperation between European scientists working on rare diseases and thus reducing the fragmentation of research in this field. E-Rare launches calls on a yearly basis. The topic and eligibility criteria are specified every year and therefore may vary from one call to the other.
Multiple System Atrophy review published in prestigious New England Journal of Medicine
Dr. Gregor K. Wenning, M.D, Ph.D.
For FREE access to the full text of the Multiple System Atrophy Review article go to the Now@NEJM blog and click on the link in the first paragraph: http://nej.md/17IvBhN
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 has really been a very exciting and historical year for the MSA community. Please download the highlights here:
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!
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
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:
9935-D Rea Rd #212
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.
Watch the recorded webcast of the recent MSA Coalition Patient Caregiver Conference.
Note there are two videos, the bottom video contains:
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:
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!
Please view the list of planned March Events
MSA Article from the Hamilton Area Dystonia Support Group Newsletter
- Bonnie Llewellyn
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: “firstname.lastname@example.org” <email@example.com>
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.
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.firstname.lastname@example.org.
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.