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.
Greater collaboration and financial growth give hope of a research breakthrough for multiple system atrophy, a devastating and rare neurodegenerative disease.
Charlotte, NC – October 1, 2015: The Multiple System Atrophy Coalition has announced its latest round of funding for researchers pursuing a cure for the devastating neurodegenerative disorder multiple system atrophy (MSA). Ten grants were awarded totaling $422,000. The research projects and recipients are as follows:
- • “Global MSA Registry & Natural History Study”: Gregor Wenning, M.D., Ph.D. (Innsbruck Medical University) and Lucy Norcliffe-Kaufmann, Ph.D. (New York University)
- • “Combination of immunotherapy against alpha-synuclein and anti-inflammatory treatment for Multiple System Atrophy”: Eliezer Masliah, M.D. (University of California San Diego)
- • “Targeting a-synuclein pathology with the molecular tweezer CLR01 in MSA”: Nadia Stefanova, M.D, Ph.D. (Innsbruck Medical University)
- • “Understanding the degradation of alpha-synuclein protein in MSA”: Janice Holton, M.D, Ph.D. (University College of London)
- • “Mechanisms of Selective Neuronal Death in MSA: Focus on blood pressure controlling areas”: Eduardo Benarroch, M.D. (Mayo Clinic Rochester)
- • “Gene expression & methylation as a route to MSA biomarkers and drug targets”: Henry Houlden, Ph.D. (University College of London)
- • “Glucagon like peptide-1 agonists for treating MSA: a preclinical POC study”: Wassilios Meissner, M.D, Ph.D. (University of Bordeaux)
- • “Defining diagnostic brain MRI markers in early MSA with a novel toolbox”: Florian Krismer, M.D. (Innsbruck Medical University)
- • “Preclinical Evaluation of Novel Therapeutic for MSA”: Ruth Perez, Ph.D. (Texas Tech University Health Sciences Center)
- • “Detection of pathological alpha-synuclein aggregates in CSF by qRT-QuIC”: Armin Giese, M.D. (Ludwig-Maximilians-University Munich)
“We are very excited and proud to announce the latest MSA research grant recipients and we are thrilled with the growth of The MSA Coalition’s research grant program”, said Judy Biedenharn, President of The Multiple System Atrophy Coalition. “The depth of talent in the scientific community and their willingness to partner with us to bring those talents to bear on solving multiple system atrophy is very encouraging. We are ever mindful of the sense of urgency that exists for MSA patients everywhere.”
The MSA Coalition more than doubled the number of grant proposals received this year over last. Projects submitted included explorations of new biomarkers that might allow earlier and more accurate diagnosis, genetic studies, pre-clinical validation of potential disease modifying drugs in transgenic mouse models as well as important pathological studies pursuing the underlying cause of MSA. Several of the awarded projects were collaborations involving multiple MSA research labs around the world including the United States, Austria, France, Germany and the UK.
“It was particularly exciting to receive so many collaborative proposals this year”, stated Pam Bower, Board Secretary and Research committee co-chair. “Collaboration is something The MSA Coalition works to actively encourage and this was facilitated by our participation at several high profile scientific conferences this past year including the Las Vegas Global MSA Research Roadmap meeting (inspired by the late MSA advocate and “Iron Chef”, Kerry Simon) and the Alpha-Synuclein Symposium in Innsbruck, Austria which attracted representatives from the Michael J. Fox Foundation.”
As a result of these connections, The MSA Coalition has become recognized globally as a change agent in the search for a cure not only for multiple system atrophy but for other related alpha-synuclein diseases. This heightened recognition has also attracted larger investments from organizations and individuals. A generous anonymous donor was inspired to give $100,000 to the MSA Coalition in 2015 which was earmarked 100% to research. The MSA Coalition is now encouraging named grants to be established with the organization in honor or in memory.
This year the MSA Coalition has received a huge boost in support through their partnership with the Blandford-Rees Foundation. Kirk Blandford, Trustee of the foundation explains, “The Blandford-Rees Foundation issued a challenge in 2015 to match dollar for dollar all designated MSA Coalition research funds received up to a maximum of $50,000. It was Jim Rees’s (a former MSA patient) wish to encourage greater research funding to support finding a cause and a cure for multiple system atrophy and I am pleased his desire to give others hope through research is being facilitated by the MSA Coalition as a recipient of this matching challenge grant.”
“The research awards we have provided thus far are “seed grants” of up to $50,000 each and are intended to jump start MSA research allowing these projects to generate enough preliminary data to warrant future funding from the larger research funding agencies”, stated Carol Langer, CPA – Board Treasurer and Research committee co-chair. “Thanks to the generous support of so many donors, both here in the US and overseas, we were able to nearly double our research budget over last year. We look forward to our continued financial growth and increased collaboration with research funding partners and scientists alike.”
The Multiple System Atrophy Coalition first established a dedicated MSA research fund in 2011. In 2013, the organization launched its MSA Research Grant Program and recruited a world class Scientific Advisory Board (SAB) made up of leading scientists and clinicians in the MSA field. The goal of the MSA Research Grant Program is to identify and fund MSA research projects that have potential to uncover the cause, discover disease modifying treatments, and hopefully lead to a cure. Through a rigorous peer review process, the SAB ensures that The MSA Coalition is funding the most promising next steps that can lead to breakthroughs in MSA research. At present, a minimum of 75% of every donation received by The MSA Coalition goes directly into the research fund. The remaining 25% goes toward much needed support and education programs including a toll-free support hotline (1-866-737-5999), educational materials, an annual patient/caregiver conference (also live-streamed on the web), continuing medical education about MSA for healthcare professionals as well as important advocacy and awareness initiatives.