“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”
Film can also be viewed at this facebook link:
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!
Please view the list of planned March Events
MSA Article from the Hamilton Area Dystonia Support Group Newsletter
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-05: Guest Post: My Nan and MSA
2014-Feb-20: VIDEO: Bright Side: Dying hair purple to help find a cure
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: “email@example.com” <firstname.lastname@example.org>
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.email@example.com.
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.