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Watch
Facing MSA, Austin Crawford claims to be "the richest man in the world" in this moving short documentary. Austin recently announced "I want to express my deepest gratitude. The documentary made by Phil Gioja and the MSA Coalition will be shown in Hollywood, California on February 24th at the famous Chinese Theater. To raise this kind of awareness about Multiple System Atrophy and remember to never give up is the most important part of all of this." The screening was part of the Golden State Film Festival.
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Read
Gwen Flowers was diagnosed with multiple system atrophy, and she has found writing poetry is helpful. Her poems have been collected in the volume License to Fly: Living with Multiple System Atrophy, which was released in January. Gwen says, "Poetry is my way of processing dealing with Multiple System Atrophy. This book is about dealing with Multiple System Atrophy, Progressive Supranuclear Palsy, Corticobasal Degeneration, Amyotrophic Lateral Sclerosis or any progressive disease that is chipping away at your life. My wish is that you will find relatability, humor, and hope in these poems." The book is available from online booksellers.
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Flowers--and Runners--Emerge in Spring
Michael Grandfield-- -Mike and KC's Miles for MSA: Mike reports "On March 15, we will be running the New Bedford Half Marathon in honor of our father who was diagnosed with MSA this past year. We hope the money raised from our efforts can be used to find a cure or new treatment methods for MSA." We are grateful for their support of the Coalition's mission; if you'd like to support this effort, go here and help put them over their goal! 2020 Miles for MSA: Providence Marathon--Kevin Bligh says his father, Mike, has been diagnosed with multiple system atrophy. "The MSA Coalition has a primary purpose of assisting researchers to find a cure. In the meantime, The Coalition also provides much needed patient and caregiver support, educational resources, and advocacy to create awareness and to fight for issues important to the MSA community. My dad has always been there for me and now it's time to do my part and I ask you to join me in trying to find a cure for MSA. . . . Running 26.2 miles sure isn't easy but when compared to what my dad and all those battling MSA are up against, it pales in comparison. Pounding the pavement to raise awareness and funds for MSA; let's do this!" Help Kevin reach his goal!
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Global Seed Investigator Grants
The Coalition is now midway through our grant review cycle at the end of which we will award funds as part of our Global Seed Investigator Grant program. Global investigators responded to a request for applications (RFA) with novel ideas to help answer this question: “How do we treat multiple system atrophy?” We specifically asked how can we develop better symptomatic therapies to improve the quality of life of patients, and/or how can we help move potential disease-modifying therapies closer to clinical trials.
The Coalition received 27 applications from groups in 15 countries with ideas to help answer these questions. (Total amount requested was $1.2 Million). These applications were subsequently reviewed and scored by our world-renowned Scientific Advisory Board (SAB), global experts in MSA research. Top scorers were invited to submit a more in-depth proposal and work plan. These proposals are currently being reviewed by independent reviewers who have no association with the project or the research center.
Our SAB will very soon arrive at the final list of recommendations for funding. The Coalition’s Board of Directors will consider the list and issue financial awards to the top projects this spring.
We are proud of our research grant program and the rigorous research application review process which was developed with the assistance of the Michael J. Fox Foundation and CurePSP.
All Coalition-funded research projects and their outcomes to date are available for review on our website. The MSA community can trust that funds directed to the MSA Coalition's research grant program will be put to work in an effort to find better treatments. |
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Award-Winning Research Sponsored by the Coalition
Florian Krismer, MD, PhD, Medical University Innsbruck recently was awarded a "Parkinsong" award for his research Morphometric MRI Profiles of Multiple System Atrophy Variants and Implications for Differential Diagnosis. This ongoing research project was previously supported by a seed grant from the MSA Coalition (awarded in 2015). We are proud to see this project receive additional recognition demonstrating the ongoing effectiveness of our seed grant program which is intended to kickstart promising MSA research projects.
Professor Krismer summarizes his work as follows: An early and reliable diagnosis of MSA is critical. However, it is difficult to discriminate different parkinsonian disorders at very early disease stages based on clinical symptoms only. Thus, for the purpose of patient counseling and clinical research, additional investigations are inevitable. Our group had previously described an MRI-based method that reliably separated MSA, PD and PSP in mild-to-moderate disease stages. Over the past 18 months, we refined this methodology and developed a MSA-specific segmentation atlas that focuses on brain regions known to be heavily affected by MSA pathology. A report describing the methodology and the results of the pilot study was accepted for publication in Movement Disorders Journal and the paper recently received the Parkinsong Award, a scientific award granted by an Austrian patient support group.
Slides showing a brief summary of this important MRI project are available at the MSA Coalition website.
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We are so grateful to all who supported the mission of the MSA Coalition with financial gifts so far in 2020. Here are ways the Coalition puts your contributions to work.
- Assistance to patients and their families with information and guidance. We spend many hours on the telephone with patients and caregivers, staying in touch over weeks and months to provide encouragement and a listening ear. We connect them with sources of information, mailing packets and emailing links. Nothing is more important to us than helping MSA families. We have walked this path too.
- The Patient and Family Conference. We make the valuable, informative sessions from this conference available for viewing online.
- Support for researchers in the early stages of their career so that they will be interested in working on this devastating neurological disease
- Funding assistance for vital research that we hope will one day lead to improvements in diagnosis and treatments -- and eventually a cure
- Producing educational materials such as our new edition of MSA: What You Need to Know.
As we move forward in the new year, please consider a gift during MSA Awareness Month, and reach out to your own contacts to invite them to support the mission, too. Thanks to you, we are making a difference!
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Do you ever wish you had a clear statement of what the MSA Coalition is and does? Your wish is our command--check it out here!
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