To mark the beginning of Multiple System Atrophy Awareness Month The MSA Coalition has been selected by the NYSE to ring The Closing Bell on March 5, 2018 at 4:00 p.m. ET. This highly visible and prominent event will help to bring much need awareness to a little known, rare and terminal disorder.
New York, NY, March 5, 2018 –The Multiple System Atrophy (MSA) Coalition today announced it was invited to ring The Closing Bell at the New York Stock Exchange on March 5, 2018 at 4:00 p.m. ET. The event is a symbolic and high-profile way to “ring” in MSA Awareness Month which is observed every March.
The Closing Bellfor the New York Stock Exchange receives excellent media coverage and has a large social media following including 1.58 million followers on Twitter, more than 288,000 Likes on Facebook, and 66,000 Instagramfollowers. Photos of The Closing Bells are available via Associated Press/New York, Reuters America, Getty Images, Bloomberg Photo and European Press Agency. B-roll of the NYSE trading floor is available five minutes prior to the Opening and Closing Bell feeds. The Closing Bell feed, which begins at 3:58 p.m. ET, is available via Encompass loop #4090. Media seeking footage via The Switch should contact NYSE Broadcast at (212) 656-5483. The MSA Coalition will be sharing photos and videos of this event on its social media platforms, as well.
“The NYSE is very pleased to have the Multiple System Atrophy Coalition ringing The Closing Bell,” said NYSE representative. “It is important to support non-profits, especially when they represent a cause with major unmet needs. We hope the exposure our platform provides gives the MSA and rare disease communities a big boost in their awareness efforts.”
MSA is a rare and terminal neurodegenerative disorder that afflicts approximately 13,000 Americans and tens of thousands more around the world. MSA strikes in mid-life and has a life-expectancy of 5-9 years after diagnosis. It is characterized by Parkinsonian, autonomic nervous system, and cerebellar symptoms. Because it is so rare it is poorly understood, and an accurate diagnosis can take several years. After diagnosis, some symptoms can be treated to improve quality of life, but no cure is available.
“The MSA Coalition is very honored to ring The Closing Bell at the NYSE on behalf of the entire global multiple system atrophy community,” said Don Crouse, MSA Coalition Vice-Chairman. “We are extremely grateful to the New York stock Exchange for giving us a prominent platform to bring much needed visibility to this rare and always fatal disorder. We are also pleased to be joined at this ceremony by patients and caregivers, MSA NJ, and The MSA Awareness Shoe. Hopefully, as The Closing Bell rings on March 5thit will bring hope to the MSA community that advocates are working on their behalf to improve awareness and that the world is starting to listen.”
Other significant MSA Awareness Month activities being sponsored and led by the MSA Coalition include its primary sponsorship of the 6thInternational MSA Congress (March 1-3 in NYC), which is the single most important gathering of MSA researchers and advocacy groups; and, hosting the 1st MSA Global Advocacy Meeting to be held in conjunction with the MSA Congress. The goal of the advocacy meeting is to bring together MSA and related charities to discuss key activities and challenges, and to develop coordinated plans for advancing the mission to support the MSA patient community. Additionally, The MSA Coalition along with other MSA charities are supporting a nationwide campaign to have all US states declare March Multiple System Atrophy Awareness Month. March is also a big month for individuals affected by MSA to set up fundraisers in support of their selected charity.
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 amazing, 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.
amazing, 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