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