The Multiple System Atrophy Coalition is pleased to introduce Joe Lindahl, MA, CAE as Executive Director. In this role, Lindahl will lead the Coalition’s professional team and work with the Board of Directors to support their mission of improving the quality of life and building hope for people affected by MSA. Lindahl will provide strategic and operational oversight for The MSA Coalition’s programs and services, such as educational programming, patient support services, advocacy, public relations, fundraising, and research.
“The MSA Coalition welcomes Joe Lindahl as our new Executive Director,” shares Cyndi Roemer, Chair of The MSA Coalition Board of Directors. “Joe brings a wealth of experience along with compassion and enthusiasm. We are delighted that he is joining our team. I am confident Joe will be an asset to our organization and ultimately, the MSA community we serve. I look forward to working with him.”
Lindahl comes from an extensive association management background and previously served as Executive Director at the Association Management Center where he led the International Transplant Nurses Society and the Academy of Breastfeeding Medicine for nearly three years. He also served in leadership roles with the National Association of Neonatal Nurses, the American Staffing Association, and the Association of Child Life Professionals. Active in the association and nonprofit community, Lindahl has volunteered in a variety of volunteer capacities with the American Society of Association Executives (ASAE) and is currently a member of the Small Staff Advisory Committee. Joe received the Association Forum 2018 Forty Under 40 Award, participated in the ASAE NextGen 2017 Summit, and earned his Certified Association Executive (CAE) certification in 2018.
“It is a privilege to join the MSA Coalition team in support of such an important and critical mission. I am truly excited to collaborate with leadership, volunteers, and the entire MSA community as we move towards continuing and advancing the Coalition’s work.”
The Multiple System Atrophy Coalition hosted its 32nd Multiple System Atrophy Annual Patient & Family Conference on Thursday, September 30th through Saturday, October 2nd, 2021. The conference began with remarks from Dr. Wolfgang Singer and Dr. Phillip Low from The Mayo Clinic on “Where Have We Come From, Where Are We Going” describing the progress that has been made in MSA research. Over 900 attendees from the U.S. and across the globe joined for sessions. This year’s host medical facility was the Mayo Clinic in Rochester, Minnesota and was sponsored by Biohaven Pharmaceuticals, Lundbeck, Theravance Biopharma, and Alterity Therapeutics.
Cyndi Roemer, Chair of the MSA Coalition had this to say about the conference: “As we continue to offer our long-standing annual conference remotely during these challenging times, we are very pleased that so many people were able to take advantage of our program to connect, learn, and inspire! It was great to interact with so many members of our community.”
This year, The MSA Coalition introduced two pre-conference elements providing even more opportunities for connection and learning. During MSA Coalition Week, September 20-24, the Board of Directors shared how the Coalition can provide support and education through on-demand videos. The week began with a presentation from Dr. Tom Chelimsky, Medical College of Wisconsin, MSA Coalition Board of Directors Emeritus, on “The MSA Journey or Who Lives in Your Village.” The week concluded with live support group discussions for patients and care partners across the globe. Community Partners Week, September 27-29, provided additional sources of support and education to the MSA Community with on-demand presentations and exhibitor booths. Our 2021 conference community partners were MSA New Jersey, MSA Belgium, Brain Support Network, the MSA Trust, CurePSP, Move Over MSA, and ARAMISE.
With a robust agenda prepared by the MSA Coalition conference committee, the conference consisted of many informative presentations from medical professionals and members of the MSA community. Some highlights from the conference included:
A presentation on diagnosing MSA by Dr. Gregor Wenning, Bishop Karl Golser Foundation & MSA Coalition Scientific Advisory Board Chair
A research panel with Dr. Daniel Claassen, Vanderbilt University, MSA Coalition Board of Directors, Medical Advisory Board Liaison, Dr. Vikram Khurana, Harvard University, MSA Coalition Board of Directors, Scientific Advisory Board Liaison, and Dr. Gal Bitan, UCLA
Dr. Gal Bitan was the 2021 Conference Keynote Speaker. During his portion of the research panel, Dr. Bitan gave an excellent non-technical explanation on the purpose and need for biomarkers and shared details of his MSA Coalition funded project to develop a blood test to distinguish MSA from Parkinson disease. Read more about his work here.
A medical panel on the value of multidisciplinary care teams with Dr. Elizabeth Coon and her team of medical professionals from the Mayo Clinic
An entire afternoon of presentations on “Living Better with MSA,” including sessions on music therapy, traveling with MSA, improvisation and laughter, and more.
Roemer continued, “We are grateful to everyone who contributed and supported this effort including the presenters, our community partners around the globe, volunteers, and sponsors. And most of all, thank you to our patients and care partners for putting your trust in us and participating in this conference. We look forward to the day when we can see you in person again and will continue to offer virtual education as well so that as many members of our worldwide community can benefit from our valued resources. The MSA Coalition continues to provide support to help you live each day to the fullest with love and hope.”
The Multiple System Atrophy (“MSA”) Coalition announces a ground-breaking million-dollar multi-year collaborative project focused on exploring the genetics of up to 1,200 people with either a diagnosis of probable MSA, in the case of living patients, or postmortem pathological confirmation of multiple system atrophy, aimed at locating commonalities in their genes that might contribute to the development of multiple system atrophy. The aim of this collaborative study is to sequence and organize the genomes of existing genetic samples as well as to organize previously sequenced whole-genome data into a single database that is accessible to researchers worldwide. While many researchers have looked at the genetics of MSA, this will be the first time such a large number of genomes from ethnically diverse populations have been sequenced and organized in such a way as to facilitate thorough analysis and collaborative enterprise.
“MSA is not typically passed from parent to child, except in extremely rare cases. However, there are still important clues about the underlying cause of MSA that can be found by examining the genetic code of a large population of MSA patients and looking for commonalities. Because MSA is a such a rare disease, there is a need for multiple researchers to work together and pool their data. Until now there has not been a concerted effort among genetic labs to combine these rare genetic samples from MSA patients with diverse backgrounds into a large, shared database,” said Pam Bower, chair of the MSA Coalition’s research committee. “The MSA Coalition is proud to be the driver of this ground-breaking study.”
University of Florida will perform genetic sequencing under the direction of Matt Farrer, PhD, while storage, analysis and visualization of data will occur at Harvard Medical School in the Clinical Genome Analysis Platform (“CGAP”) under the direction of Dana Vuzman, PhD. Additional genomic information will be provided by University College of London, Queen Square Institute of Neurology under the direction of Henry Houlden, MBBS, MRCP, PhD; by Translational Genomics Research Institute (TGen) under the direction of Matt Huentelman, PhD (Funded in part by the Rex Griswold Foundation, a grant from the NIH NINDS (R21-NS093222, PI: Huentelman), and through institutional support of TGen.); and by Seoul National University, under the direction of Beomseok Jeon, MD, PhD and Han-Joon Kim, MD, PhD. The Core G team also plans to coordinate their work with that being done at NIH under the direction of Sonja Scholz, MD, PhD. The group, collectively known as “Core G” (Genetics), will work closely with Vik Khurana, MD, PhD, board member and Scientific Liaison of the Board of Directors of the MSA Coalition and Chief of the Movement Disorders Division at Brigham and Women’s Hospital and Harvard Medical School. Dr. Khurana will endeavor to integrate Core G team-member efforts more broadly into the Multiple System Atrophy Collaborative Research Cores sponsored by the MSA Coalition that will seed fund additional projects over time.
“I am thrilled that after years of planning and deliberation that Core G is funded and ready to go,” said Khurana. “This group of terrific researchers, together with their expertise, bring precious patient samples from three continents to establish a foundation upon which other collaborations and initiatives will be built. We are under no illusion that the genetics of MSA will prove challenging, no less than a moonshot. At the same time, genetic insights promise to unlock powerful hypothesis-driven science that can find cures. And so, this moonshot is worth the effort and has been structured to be collaborative, open and sustainable in the long-term.”
“We are incredibly proud of assembling this group of world-renowned researchers to collaborate on this project. It has taken almost three years to organize this project and obtain consents from all the institutions involved. Great care has been taken by all contributing institutions to safeguard the privacy of the patients and anonymize the genetic materials, so that patient privacy is protected,” said Cynthia Roemer, MSA Coalition board chair. “We are also grateful to our many donors, who have made this project possible, and to the patients we have lost to MSA who generously left bequests to the MSA Coalition to further critical research like this. We quite literally could not do it without them!”
Dana Vuzman, PhD is an Instructor of Medicine at Harvard Medical School and the Director of Genomic Platform Development at DBMI. Dr. Vuzman oversees the implementation of the Clinical Genome Analysis Platform (CGAP) and the Single Cell RNA Platform in the Department. Prior to joining DBMI, she served as Chief Informatics Officer at One Brave Idea, Sr. Director of Biomedical Informatics at KEW, Inc., and Co-Director at Brigham Genomic Medicine. Dr. Vuzman earned her PhD in Computational Biology from the Weizmann Institute of Science in Israel and completed her postdoctoral training in Computational Genetics at Brigham and Women’s Hospital and Harvard Medical School.
Matt Farrer, PhD is critically acclaimed for his work in the genetics and neuroscience of Parkinson’s disease. His inspiration to apply genetic analysis to complex neurologic disorders came from early work as a care assistant of patients and families with neurologic and psychiatric disorders. Dr. Farrer earned his first degree in Biochemistry with a Doctoral degree in Molecular and Statistical Genetics from St. Mary’s Hospital Medical School, UK. He completed a fellowship in Medical Genetics at the Kennedy-Galton Centre, UK and in Neurogenetics at Mayo Clinic. Dr. Farrer became an Assistant Professor of Molecular Neuroscience in 2000 where he opened his first laboratory to predict and prevent Parkinson’s disease. Dr. Farrer became a tenured professor in 2006, a Mayo Consultant, and subsequently, a Distinguished Mayo Investigator. In 2010, Dr. Farrer was awarded a Canada Excellence Research Chair to build the Centre for Applied Neurogenetics and Neuroscience at the University of British Columbia, Vancouver, Canada where he became a Professor of Medical Genetics. The Province of British Columbia subsequently awarded him the Don Rix Chair in Precision Medicine, and his team had many notable accomplishments including several new genes and mouse models for Parkinson’s disease. The team also implemented high-throughput sequencing in pediatric seizure disorders and neonatology in clinical service. The former was funded through the Medical Services Plan of British Columbia and was a first for Canada.
In 2019, Dr. Farrer accepted an endowed chair at the Norman Fixel Institute for Neurological Diseases (thanks to a generous endowment from the Lauren and Lee Fixel Family Foundation). Dr. Matt Farrer also directs the UF Clinical Genomics Program. As such he currently has appointments and affiliations in the UF College of Medicine’s Neurology and Pathology Departments, Clinical and Translational Science Institute, the Evelyn F. and William L. McKnight Brain Institute, the Center for Translational Research in Neurodegenerative Disease, and the Center for Neurogenetic in addition to the Norman Fixel Institute for Neurological Diseases.
Henry Houlden, MBBS, MRCP, PhD: Dr. Houlden is a professor of neurology and neurogenetics in the Department of Neuromuscular Disease, University College, London, Queen Square Institute of Neurology, and undertakes research laboratory works on neurogenetics and movement disorders with a particular interest in rare diseases that are adult or childhood-onset, such as multiple system atrophy (MSA), spinocerebellar ataxia and other movement disorders, inherited neuromuscular conditions, and difficult to diagnose disorders, particularly in diverse and underrepresented populations. He assists with the integration of new gene discovery with exome and genome sequencing identifying disease genes such as CANVAS, NARS1, NKX-6.2, SCA11, SCA15, GRIA2, and GAD1, with functional experimental validation in human tissue and other model systems. Dr. Houlden has clinical expertise in inherited neurological disorders and movement disorders such as multiple system atrophy, ataxia, leukodystrophy, epilepsy and paroxysmal conditions, spastic paraplegia and neuromuscular conditions.
Matt Huentelman, PhD: Dr. Huentelman’s research interests center around the investigation of the “-omics” (genomics, transcriptomics, and proteomics) of neurological traits and disease. His laboratory’s overarching goal is to leverage findings in these disciplines to better understand, diagnose, and treat human diseases of the nervous system.
Dr. Huentelman joined TGen in July of 2004 after completing his doctoral work at the University of Florida’s Department of Physiology and Functional Genomics at the McKnight Brain Institute where he investigated the application of gene therapy in the study and prevention of hypertension. His undergraduate degree is in Biochemistry from Ohio University’s Department of Chemistry and Biochemistry at Clippinger Laboratories. Dr. Huentelman’s career includes visiting researcher stints in Moscow, Russia at the MV Lomonosov Moscow State University “Biology Faculty” and in the United Kingdom within the University of Bristol’s Department of Physiology.
Beomseok Jeon, MD, PhD: Professor Jeon is the medical director of the Movement Disorder Center, Seoul National University Hospital and is interested in genetics of Parkinsonism and medical and surgical treatment of advanced Parkinson’s Disease.
Dr. Jeon earned his undergraduate, MD and PhD degrees from Seoul National University. His clinical interests include Parkinson’s disease and other movement disorders including tremor, ataxia, dystonia, and chorea. His research focuses on the role of genetics in movement disorders, especially in the Korean population. He has established a DNA bank of thousands of Korean patients with movement disorders and normal controls. He is also involved in treatment of advanced Parkinson disease, and works with neurosurgical colleagues for various surgical treatment.
Han-Joon Kim, MD, PhD: Dr. Kim is a Professor in the Department of Neurology and the Movement Disorder Center at Seoul National University Hospital, Seoul, Korea. After graduation from the Medical College of Seoul National University in 1997, Dr. Kim took an internship and residency in neurology at Seoul National University Hospital (SNUH) where he became a Movement Disorder Specialist.
Clinically, Dr. Kim has experience with patients with various movement disorders including Parkinson’s Disease (PD), Multiple System Atrophy (MSA), other atypical Parkinsonisms, and ataxias. Notably, Dr. Kim has set up a large registry of Korean MSA patients, which will serve as a basis for both observational and interventional studies in this rare disease.
Sonja W. Scholz, MD, PhD: Dr. Scholz is a Neurologist and Neurogeneticist specialized in movement and cognitive disorders. She received her medical degree from the Medical University Innsbruck, Austria. Following graduation, she was a post-doctoral fellow at the Laboratory of Neurogenetics at the NIH’s National Institute on Aging (NIA) under the supervision of Drs. Andrew Singleton and John Hardy. She obtained a Ph.D. in Neurogenomics from the University College London, UK in 2010. She then moved to Baltimore to complete her neurology residency training at Johns Hopkins. In 2015, Dr. Scholz received the McFarland Transition to Independence Award for Neurologist-Scientists. She is a Lasker Clinical Research Tenure Track Investigator within the Neurogenetics Branch at the NIH’s National Institute of Neurological Disorders and Stroke (NINDS). Her laboratory focuses on identifying genetic causes of neurodegenerative diseases, such as dementia with Lewy bodies, multiple system atrophy, and frontotemporal dementia.
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In the video below, Vikram Khurana, Scientific Liaison to the MSA Coalition Board of Directors, Chief of the Division of Movement Disorders at Brigham and Women’s Hospital and Harvard Medical School, announces outcomes of some notable research projects. This presentation was included in the 2021 MSA Coalition Patient & Family Conference.
The MSA Coalition is proud to announce that the research project “Abdominal Binders to Treat Orthostatic Hypotension in Multiple System Atrophy” has received additional funding. In 2020, the MSA Coalition awarded $50,000 in seed funding to investigators at the Innsbruck Medical University Clinic for Neurology for this project that aims to improve the mobility and gait security of people affected by Parkinson’s syndromes including multiple system atrophy (MSA). The project investigates whether wearing an abdominal bandage can prevent spontaneous drops in blood pressure which can often lead to falls and serious injuries.
This important research study has caught the attention of the Dr. Johannes and Hertha Tuba Foundation which provides annual awards in support of outstanding projects in the field of aging research, garnering it 100,000 euros in additional funding. The research is being conducted by principal investigator Professor Gregor K. Wenning, MD, PhD along with co-investigators Dr. Alessandra Fanciulli, MD, PhD and Dr. Cecilia Raccagni, MD, PhD at the Medical University of Innsbruck, Austria.
“We are proud to see this research project supported by the MSA Coalition’s seed grant program grow with the additional funding provided by the Dr. Johannes and Hertha Tuba Foundation,” said Pam Bower, Board Secretary and Research Committee Chair, the MSA Coalition. “One of the goals of the MSA Coalition’s research program is to support work that can increase quality of life, and this project is a great example. This research will help determine if using a simple abdominal binder to help maintain blood pressure might reduce the risk and fear of dangerous falls and eliminate the need for resorting to drugs in some patients. The infusion of additional funds from the Tuba Foundation will help ensure that an adequate number of patients are studied to generate sufficient data from this project.”
People with Parkinson’s and people with MSA are often affected by falls and associated injuries. Orthostatic hypotension (OH) is a key feature of MSA, and it is characterized by severe blood pressure drops upon standing and worsens quality of life by causing recurrent spells of dizziness, blackouts and falls that can lead to serious injury and render a patient bedridden.
In patients with OH due to Parkinson’s disease, elastic abdominal binders have proven to combat OH, without inducing high blood pressure when lying down. Regular use of abdominal binders also significantly improved OH-related symptoms in daily life. This research project examines the efficacy of elastic abdominal binders in treating OH in MSA patients. This non-drug intervention is particularly useful for older patients who often suffer from interactions when taking several drugs at the same time.
“The pronounced tendency to fall in older Parkinson’s and MSA patients is associated with a high risk of injury and mortality. But these motor deficits are relatively easy to treat: The mechanical stabilization of the blood pressure improves gait security, helps avoid falls and thus makes everyday life easier for those affected,” said Wenning.
To read more about the Dr. Johannes and Hertha Tuba Foundation Award and the research program “Abdominal Binders to Treat Orthostatic Hypotension in Multiple System Atrophy,” click here (this article is in German, so make sure to use your browser’s translate option, such as Google Translate).
To learn about research projects funded by the MSA Coalition, click here.
As part of its commitment to promote global awareness and research on multiple system atrophy, the MSA Coalition is a Prime Sponsor of the 7th International Congress of Multiple System Atrophy. The Congress will be hosted by the University of Tokyo and will be held virtually February 26 – 27. The International Congress of MSA brings together top researchers, clinicians and pharmaceutical companies to stimulate global collaboration in the urgent search for better diagnostic tools and treatments for MSA.
“The International Congress of MSA is the single most important meeting of MSA researchers and advocacy groups,” said Cynthia Roemer, EdD, Chair, Board of Directors, the MSA Coalition. “The MSA Coalition believes it is critically important to support and collaborate on a global level to improve outcomes for multiple system atrophy patients worldwide. After initiating the first Global MSA Advocacy meeting at the 2018 Congress, we are delighted to again host a meeting with our current charity partners as a means to unify our efforts. The MSA Coalition proudly supports the International Congress of MSA continuing many years of successful partnership.”
The MSA Coalition Board members Cynthia Roemer and Pam Bower will present the session “MSA Advocacy & Research Directions.” The MSA Coalition funds patient-centric collaborative research aimed at alleviating symptoms, slowing disease progression and discovering a cure. In 2020, the MSA Coalition surpassed $2 million in total research funded.
“We are very thankful to the MSA Coalition for its Prime Sponsorship of this Congress, and the University of Tokyo is proud to be the first ever Japanese host of this prestigious event,” said Shoji Tsuji M.D., Ph.D., Professor of Molecular Neurology at the University of Tokyo and President of the 7th International Congress of Multiple System Atrophy. “With virtual presentations by the foremost MSA research experts and top advocates to a global audience of scientists and healthcare professionals, considerable progress can be made towards advancing our understanding of the current state of MSA research. This Congress facilitates the continuing commitment of all participants to work collaboratively on a global scale to advance MSA research, the best hope for making progress against this horrible disorder.”
To learn more about the 7th International Congress of Multiple System Atrophy, visit the Congress website.
The Multiple System Atrophy Coalition is pleased to announce Sheila Lyons as Executive Director. Lyons will lead the professional staff and work with the MSA Coalition Board of Directors to support the Coalition’s mission to improve the quality of life and build hope for people affected by MSA. Lyons will provide strategic and operational oversight for the MSA Coalition’s programs and services, such as educational programming, support services, advocacy, public relations, fundraising, and donor support.
“The MSA Coalition is happy to welcome Sheila Lyons as our first Executive Director. Since partnering with MCI and professional staff in July, we have worked to identify the best candidate to serve as the MSA Coalition’s first executive director,” said Cyndi Roemer, Chair, Board of Directors, The MSA Coalition. “Sheila has the strong background in non-profit management that will help the MSA Coalition enhance and expand our key services and programs. But just as important, she also has the heart and compassion that will enable her to meet the needs of our patient and care partner community.”
Lyons has more than 20 years of extensive non-profit experience as well as strategic, fundraising and financial leadership. She most recently served as Executive Director of Apollo, where she led the Chicago arts organization through a strategic planning process that revitalized the 147-year-old organization. She previously launched an Associate’s Degree in Entrepreneurship at City Colleges of Chicago, and served as the first executive director at the Triad Entrepreneurial Initiative.
“I am honored to be selected for this opportunity to work with the Board of the MSA Coalition who have demonstrated such leadership and vision. This is an extraordinary opportunity to blaze new pathways that can improve the quality of life and build hope for people affected with MSA and their care partners,” commented Sheila Lyons, Executive Director, The MSA Coalition.