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The Multiple System Atrophy Coalition Honors Seventh Annual International MSA Awareness Month in March 2016

The Multiple System Atrophy Coalition Honors Seventh Annual International MSA Awareness Month in March 2016

by | Mar 1, 2016 | MSA Coalition Press Releases

Every March is Multiple System Atrophy Awareness Month and represents the ideal opportunity for the MSA community to unite in creating awareness for this rare and fatal neurodegenerative disorder.

Charlotte, N.C. – March 1, 2016: The Multiple System Atrophy (MSA) Coalition today announced the kickoff of Multiple System Atrophy (MSA) Awareness Month. In 2010, March was first officially declared as MSA Awareness Month. Since then, this annual event has grown to be a rallying point for the multiple system atrophy community, when thousands of patients, caregivers and advocates internationally join together to spread Multiple System Atrophy awareness and raise funds for the cause. The nation’s oldest and largest nonprofit dedicated to the disease, the Multiple System Atrophy Coalition, is encouraging everyone to support MSA Awareness Month to better educate the public who may not know about the rare disease, and to aid in fundraising efforts for increased research, advocacy, support and education resources for patients and families affected.

The Multiple System Atrophy Coalition honors this month, which blossomed from an idea first put forth by Bob Summers of Murfreesboro, TN whose wife Susan was afflicted with multiple system atrophy and passed away after a valiant battle. In his first Facebook post proposing the idea, he shared, “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.” As a former high school basketball coach, Bob Summers also suggested that all should wear the color purple during this month to emphasize the collective team aspect of raising awareness.

Support MSA Awareness month during March. Some ways you can get involved this month:

  • Host a fundraising or education event or create an online fundraising page to share with family, friends, colleagues, classmates, and all contacts.
  • Show support for those battling MSA by wearing purple every day in March, while telling everyone what the purple clothing represents.
  • Update personal social media platforms with MSA awareness cover photos or badges; share personal MSA stories or posts from the MSA Coalition to show support.
  • Write to local media about MSA Awareness Month through an editorial, blog post, or letter to the editor.

“We are passionate about raising awareness for this rare disease beyond those who are directly affected by it. It’s #MSACantTake Multiple system atrophy can't take achievements away from its victimsamazing, but oftentimes even friends and former coworkers of MSA patients know very little about MSA and they don’t know how to help,” stated Judy Biedenharn, Chairman of the MSA Coalition. “As our recently launched awareness initiative says, #MSACantTake our determination to find a cure. During this special month, we are hopeful the MSA community will unite to create a loud collective roar about the plight of multiple system atrophy patients and the urgent need to fund research and increase support. We encourage all affected by MSA to set up a fundraiser page so their network can have an easy way to help in the battle against this horrible disease.”

The disease takes many things from patients including their ability to work and be productive, to do simple daily activities like walking to the mailbox and eating without help, and ultimately life itself. The #MSACantTake campaign is intended to emphasize what Multiple System Atrophy Can’t Take from those affected by the condition, such as the will to fight, striving to make every day count, and the love of family and friends. Please join the conversation by using the hashtag #MSACantTake and sharing stories about the impact of MSA publicly on Facebook, Twitter and Instagram.

Facilitating and funding research is the main focus for dollars raised by the Multiple System Atrophy Coalition. Its scientific advisory board of renowned global MSA researchers, scientists and physicians collectively serve as the reviewing body for the MSA research grant program. In October 2015, the MSA Coalition announced that ten research grants were awarded, totaling $422,000. To see all the projects funded by the MSA Coalition, please visit https://www.multiplesystematrophy.org/research/funded-projects

For the remainder of 2016, the MSA Coalition’s planned highlights include selecting the recipients of the next round of funded MSA research grants, sponsorship of the fifth International MSA Congress for scientists and physicians in Salerno, Italy (April 22-23) and the next Annual Patient and Family Conference in New Orleans (October 14-15).

To donate easily via a mobile phone text – March4MSA – to 41444 and donate $5 or more.

The Multiple System Atrophy Coalition Honors Seventh Annual International MSA Awareness Month in March 2016

To All of Us

by | Dec 20, 2015 | MSA-Blog

A Guest Blog Post By MSA Patient, Dan Gallivan

To All of Us,

The MSA Coalition and some 75 Individuals have done an outstanding job of collecting $106,000 in donations from family, friends, and co-workers. The $106k will be matched through the generosity of two families.

There is a problem, we are leaving $46k on the table and with the match it becomes $92k.

Dan-gallivanI was sitting in the quiet today, not feeling well and was thinking about the $46k our group needs to collect in order to get the whole match. As an individual I don’t know how to come up with $46,000. I was only able to collect $2900 in donations. I have not stopped, I am trying to do more.

Folks we cannot afford to leave this much money on the table. We need it for research. If not for us, then for the folks that come after us. But I prefer it be for us.

What came into mind was this statement “Just Ask”.

“Just Ask” for the donation. So as a “Group” if we just ask our friends, relatives, ex co-workers, a few wealthy individuals, we may be able to close the gap on the $46k.

So here is the plan of attack, each one of us will “Just Ask” for a $500 donation. Don’t be shy, “Just Ask” we need to be successful with only 92 donors to hit the $46k mark. Out of all of us that are reliant on the MSA Coalition I suspect there are more than 92 of us. So all of us need to “Just Ask” until we have 92, $500 donors, or, 115 donors donating $400 each, or 153 donors donating $300 each, or 230 donors donating $200 each or 460 donors donating $100 each. From there it is 614 @ $75, 920 @$50 and 1840 @$25. Or a combination of all of the 7 groups.

We can do this. We have until January 7th 2016 to get it done. Let’s help our friends at the MSA Coalition reach 100% of the match. Besides it all benefits us. So we need to get this done. We need the research dollars.

Now, I am praying hard that I do not offend anyone. It is not my intent.

Please listen, we are the experts, who else is better equipped to explain to a donor what their donation means to us. We are living this nightmare. What it also means, is a trained staff, ongoing research, support groups, reading materials, professional speakers, conferences bringing doctors and researchers together, linking the UK and Japan with us. We need this money, let’s go out and “Just Ask” for the donation.
If you do not have an account set up you can use my CrowdRise account; just click on the link below: : https://www.crowdrise.com/MultipleSystemAtrophyCoalition/fundraiser/danielgallivan.

Please accept my apology if I have offended anyone.

God Bless Us all;

Dan Gallivan

PS: For more ideas on how to fundraise see these MSA blog posts: