Charlotte, N.C. (PRWEB) December 23, 2015
The Multiple System Atrophy (MSA) Coalition today announced it is currently in third place in the CrowdRise Holiday Challenge, a fundraising contest with hundreds of 501c3 organizations participating. Fueled by generous volunteers and year-long awareness efforts including its MSA Can’t Take campaign and the holiday crowd funding push, the MSA Coalition is on track to have its best fundraising year ever.
In the CrowdRise Holiday Challenge alone, the MSA Coalition has raised over $123,000 since Giving Tuesday, with just $27,000 to go before a generous matching gift offer of $150,000 will expire on December 31, 2015. The MSA Coalition is also vying for one of the three CrowdRise challenge grand prizes awarded to the top three donation-generating charities ($100,000 for first place, $50,000 for second and $25,000 for third place). One hundred percent of all donations, matching gifts and prize money is earmarked to fund MSA research grants in 2016.
“We are determined to maximize the $150,000 matching gift pledged to us for the CrowdRise Holiday Challenge and to secure at least a third place prize,” stated Pam Bower, MSA Coalition Board Officer. “If we can raise another $27,000 before year-end and maintain our current third place position, the MSA Coalition will have secured at least an additional $325,000 for our MSA research grant program in 2016. That is enough funding to cover six or seven additional grants, which will strive to find treatments and hopefully a cure for MSA.”
Research remains the main focus for funds raised by the MSA Coalition. Its scientific advisory board is composed of renowned global MSA researchers, scientists and physicians, who collectively serve as the reviewing body for the research grant program. In October, 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
“We are grateful for the ongoing efforts of the MSA Coalition,” shared David Robertson, MD, Professor of Neurology, Vanderbilt University Medical Center and chairman of the Coalition’s scientific advisory board. “Because of its investment in the MSA community and its relentless pursuit of fundraising, we continue progressing toward defining a cause, pursuing treatment and finding a cure for this disease.”
The MSA Coalition also had a strong year in terms of its other core objectives of providing education to physicians and the community, advocacy and awareness, and providing emotional support and guidance to patients and caregivers. March is MSA Awareness Month and the Coalition took a leadership role on social media to generate conversation and awareness for the disease. The organization also partnered with the Autonomic Rare Disease Clinical Research Consortium (ARDCRC) to help promote awareness and secure funding for rare disease research within the National Institute of Health (NIH). Throughout the year, MSA Coalition volunteers attended and participated in many important medical conferences including the American Academy of Neurology, the Movement Disorder Society and the American Autonomic Society. The MSA Coalition also funded continuing medical education programs for primary care physicians to improve diagnosis and treatment of multiple system atrophy.
In October, the MSA Coalition once again hosted its Annual Patient and Family Conference. This year, patients and families gathered in Seattle, Wash. to hear presentations by expert neurologists familiar with MSA. Interaction among families in patient and caregiver breakout sessions was the highlight for those attending; for many, this conference is the only opportunity to meet others currently experiencing the disease. Attendees also received an update on the state of MSA research. To see more from the conference, watch the Call to Action video here: https://www.multiplesystematrophy.org/resources/video.
In November the MSA Coalition launched a new MSA awareness initiative. 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 MSA Can’t Take from those affected by the condition, such as the will to fight and determination to find a cure.
“The work of the MSA Coalition will continue for as long as the disease is impacting lives,” said Judy Biedenharn, Chairman of the Coalition. “Of course, our goal is to someday discover a cure and thereby make our organization obsolete. Thank you to our supporters; we look forward to 2016 and the ongoing progress we will make together with patients, caregivers, friends and donors.”
In 2016, planned highlights include MSA Awareness Month (March), the Coalition’s sponsorship of the fifth International MSA Congress in Salerno, Italy (April 22-23); and the next Annual Patient and Family Conference in New Orleans (October).
For more information, please visit https://www.multiplesystematrophy.org.
About Multiple System Atrophy
Multiple system atrophy (previously known as Shy-Drager Syndrome) is a rare and fatal disorder with less than 15,000 Americans diagnosed and 35,000 undiagnosed at any given time. According to the National Institutes of Health, "Multiple system atrophy is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells (neurogenic orthostatic hypotension) and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of balance and muscle coordination.” MSA affects both men and women primarily in their 50s. MSA tends to advance rapidly over the course of 6 to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure available.
About The Multiple System Atrophy Coalition®
The Multiple System Atrophy Coalition is a positive beacon of hope standing up to a little known, rare, insidious disorder. Made up of dedicated volunteers, The MSA Coalition has a primary purpose of encouraging and funding research to find a cure. At present, as much as 75% of all donations go directly into a dedicated Multiple System Atrophy Research Fund to support research projects relevant to the cure, cause, prevention, improved treatment, diagnosis and/or understanding of Multiple System Atrophy. Oversight of the research grant review process takes the form of a world-class scientific advisory board (SAB) of MSA expert scientists and clinicians who are dedicated to ensuring the most promising MSA research proposals are evaluated, highlighted and recommended for funding. Through their website, social media discussion forums and a dedicated toll free support line (1-866-737-5999) The MSA Coalition provides much needed emotional support to patients and their families. The MSA Coalition sponsors and organizes an annual patient and family conference providing people with the opportunity to learn more about MSA and to develop a sense of community. The MSA Coalition also produces and distributes educational materials to the MSA community and healthcare practitioners. For more information or to donate to The Multiple System Atrophy Coalition, please visit: http://www.MultipleSystemAtrophy.org