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.
McLean, VA, December 3, 2020 The NFL is helping raise awareness of the Multiple System Atrophy Coalition as part of its annual “My Cause My Cleats” campaign. Washington Football Team player Jon Bostic has selected the MSA Coalition as his cause for this national awareness and fundraising campaign. Bostic will wear his MSA Coalition customized game cleats on Monday, December 7, at the Washington Football Team vs. Pittsburgh Steelers game.
The 2020 season will mark the fifth year of the NFL’s My Cause, My Cleats initiative. On Monday, December 7, at the Washington Football Team vs. Pittsburgh Steelers game at Heinz Field, Bostic will be among the select Washington Football players wearing custom designed cleats that would normally fall outside the league’s usual dress code.
The initiative encourages NFL players to use this event to raise awareness for the myriad of different charities. The Washington Football Charitable Foundation will be auctioning off select players’ and coaches game-worn cleats to support their chosen non-profit organizations.
Photos by the Custom Shoe Designer Soles by Sir
The MSA Coalition has invested $250,000 in five new research projects aimed at improving the lives of those with multiple system atrophy.
McLean, VA – September 1, 2020: The Multiple System Atrophy Coalition, the leading nonprofit funder of global MSA research, today announced the latest recipients of their annual research grants awarded for the scientific study of the devastating neurodegenerative disorder multiple system atrophy (MSA). The five selected projects, awarded a total of $250,000, exemplify the MSA Coalition’s established research mission to facilitate discovery of the underlying cause, to enable early-stage laboratory development of candidate drugs and to initiate patient-centered clinical studies. Since 2013, the MSA Coalition has invested over $2 million in MSA research represented by more than 40 MSA projects at 30 research centers in ten countries and continues its seven-year history of alignment with the vision of the Global MSA Research Roadmap established in 2014.
“We are very pleased to announce the latest MSA research grant recipients, and we are encouraged by the rapid growth and global recognition of the MSA Coalition’s research grant program,” said Cyndi Roemer, Chair, the Multiple System Atrophy Coalition. “We are excited to continue to collaborate with MSA Trust (UK) as we jointly support two projects. As an outcome of our first Global MSA Advocacy meeting in 2018 and some subsequent discussions, we look forward to expanded collaborations with our charity partners around the world as we continue this critical work. It’s so important, especially during the Covid-19 pandemic, that we work together to continue to push MSA research forward. We are ever mindful of the urgent needs of our global MSA community of patients and families. Please know the MSA Coalition continues to be here for you, you are not forgotten.”
“This year we are supporting two labs focused on exploring the elusive underlying cause of MSA, two projects evaluating FDA approved drugs as possible MSA therapies, as well as a clinical study of a device to control orthostatic hypotension,” stated Larry Kellerman, Board of Directors and Research Committee co-chair. “All of these projects have great potential to benefit patients in the near future. As we strive to fund the most impactful MSA research we are ever mindful of the urgency of our mission.”
The 2020 MSA Coalition funded research projects and award winning investigators are as follows:
Discovering the Underlying Cause (Pathogenesis):
- “Exosomal alpha-synuclein and TPPP/p25α: Potential culprits in MSA pathogenesis?”: Maria Xilouri (Academy of Athens, Greece)
- “The role of repeat expansions in Multiple Systems Atrophy (MSA)”: John Hardy (University College of London, UK) and Viorica Chelban (University College of London, UK)
Developing Candidate Drugs (Preclinical):
- “Testing MPH as a novel neuroprotective therapy in pre-clinical models of Multiple System Atrophy”: Alessio DiFonzo (University of Milan, Italy) and Arianna Belluci (University of Brescia, Italy)
- “Myeloid cell depletion as therapeutic target in multiple system atrophy”: Juergen Winkler (University Hospital Erlangen, Germany) and Johannes Schlachetzki (UC San Diego, USA)
Initiating Patient-Centered Studies (Clinical):
- “Abdominal Binders to treat Orthostatic Hypotension in Multiple System Atrophy”: Gregor Wenning (Medical University of Innsbruck, Austria), Alessandra Fanciulli (Medical University of Innsbruck, Austria) and Cecilia Raccagni (Medical University of Innsbruck, Austria)
“Our annual call for multiple system atrophy research grant proposals continues to provide the MSA Coalition with a robust pool of grant funding opportunities which are received through a competitive application process and selected based on rigorous peer-review by a panel of scientific experts,” said Dr. Phillip Low. “As an originating member of the MSA Coalition Scientific Advisory Board, it is exciting to see this charity surpass $2 million in research funding. The MSA Coalition’s pioneering efforts to mobilize the MSA community as advocates and fundraisers has truly energized the MSA research community and has led to a record number of excellent MSA research projects being performed and published.”
“We are so inspired by amazing patient advocates who dream of a better future for all affected by MSA,” said Pam Bower, Board of Directors and Research Committee co-chair. “As panelists leading the Advocacy Working group at the Global MSA Research Roadmap meeting in 2014, MSA Coalition representatives voiced this shared dream, calling on the global research community to ‘find a cure for multiple system atrophy!’ Thanks to the work of our volunteers, donors and supporters, labs around the world are paying more attention to MSA, and every research grant funded brings us closer to realizing this dream. Until then, our work is not over, our search for the very best ideas in MSA research will begin again this fall with the announcement of our next call for grant proposals.”
The Multiple System Atrophy Coalition first established a dedicated MSA research fund in 2011 and recruited a world renowned Scientific Advisory Board (SAB) made up of leading MSA scientists and clinicians. In 2013, the organization launched its MSA Research Grant Program with the funding of five seed grants. 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 a cure. To best accomplish its research goals, the MSA Coalition participated in the 2014 Global MSA Research Roadmap Meeting and immediately aligned its research program with the conference guidelines. By following the research roadmap and using a rigorous peer review process, the SAB ensures that the MSA Coalition is funding the most promising research projects.
In addition to encouraging and funding MSA research, the MSA Coalition is North America’s trusted provider of much needed support and education programs including a toll-free support hotline (1-866-737-5999), educational materials, the world’s largest annual MSA patient and family conference (live-streamed on the web since 2014 for virtual attendees), major sponsor of medical education for healthcare professionals, provider of travel grants for early career investigators, founder of the Global MSA Advocacy Consortium, as well as a leader and organizer of important awareness initiatives.
Learn more at http://www.multiplesystematrophy.org/
MCI USA Association Solutions will be providing staff and services to manage the day-to-day functions of the MSA Coalition. Spearheaded by a full-time Executive Director, key areas of responsibility for MCI USA include event planning, public relations, advocacy, educational programming, management of the global research grant program, and accounting & donor management services. The MSA Coalition Board of Directors will oversee MCI USA’s activities supporting the organization.
McLean, Virginia, July 14, 2020 — The Multiple System Atrophy Coalition (MSA Coalition), the leading nonprofit funder of global MSA research, today announced a strategic partnership with MCI USA’s Association Solutions division. The announcement signals a major milestone for the MSA Coalition as it continues its remarkable growth and expansion of service and programs to the multiple system atrophy community. As of July 1, 2020, MCI USA’s dedicated team of nonprofit professionals began supporting patients, care partners, and medical professionals on the frontlines of the battle against multiple system atrophy, a rare and rapidly progressive neurological disorder that affects approximately 250,000 people in the middle years of life worldwide.
Supporting the MSA Coalition Board of Directors, a full-time Executive Director will manage various experts at MCI USA as they provide skilled support to enhance and expand key services and programs such as educational programming, planning of the world’s largest MSA patient and family conference, advocacy, public relations, fundraising, and donor support. MCI USA will also manage day-to–day operations and provide accounting administration.
“This is a pivotal moment in the MSA Coalition’s history. Over 30 years ago our organization was born out of the resolve of one caregiver to make a difference in the lives of other MSA families. Since then our volunteer Board of Directors have remained ‘hands-on’ performing all administrative functions without hired staff. Now we are excited to take our programs and initiatives to the next level with the professional support of MCI USA,” said Cyndi Roemer, Chair, Board of Directors, the MSA Coalition. “The MSA Coalition’s new partnership with MCI USA will enable us to enhance our activities around the four pillars of our mission: providing credible and relevant education, offering trusted emotional support, building a unified MSA community, and funding patient-centric research that is so important to finding a treatment and ultimately a cure for MSA. An exciting benefit of the management support offered by MCI USA is that it will allow the MSA Coalition Board to focus on governance, big-picture strategies, and personal relationships with those in the MSA community. The Board will also oversee the work being conducted by the team at MCI USA to ensure it is efficiently and effectively advancing our strategic plan.”
The MSA Coalition’s decision to move to paid staff was part of a two-year strategic planning process focused on how best to bring real hope to those suffering from MSA. Additionally, the MSA Coalition recently announced strong financial results for 2019 with revenue of $4.2 million. The nonprofit ended the year with net assets of $5.4 million, of which $3.3 million is restricted, primarily to research. The MSA Coalition’s strong financial position assures sustainability of North America’s largest charitable provider of MSA support, education, and research funding.
“With financial security and a well-designed strategic plan in place that required professional help to execute it, an extensive and thorough search was conducted to identify the best association management company to carry out the strategies approved by the MSA Coalition Board of Directors,” stated Carol Langer, Treasurer, the MSA Coalition. “Starting with sixteen responses to our request for proposals, the MSA Coalition Board ultimately determined MCI USA to be the best fit for meeting the needs of the MSA Coalition and the community it serves.”
For nearly 30 years, MCI USA’s Association Solutions division has helped advance the goals of its mission-driven nonprofit clients. With more than 350 employees in six U.S. locations, MCI USA provides results-oriented experience and expertise in full-service nonprofit management, strategic planning, fundraising, community building, creative services, technology solutions, event conceptualization, and more. MCI USA’s healthcare clients include the Association for the Advancement of Wound Care, Association of Women Surgeons, Interstitial Cystitis Association (ICA), Psychiatric Rehabilitation Association (PRA), and RESOLVE: The National Infertility Association – all groups that combine an essential mission with a need to educate clients and patients, professionals, and the general public about critical health care issues.
“MCI USA is proud to welcome the Multiple System Atrophy Coalition as a strategic partner,” said Erin M. Fuller, FASAE, CAE, President, Association Solutions, MCI USA. “We look forward to collaborating with the MSA Coalition Board and community to improve the lives of people impacted by this terrible disease through support, education, research, and advocacy.”
In recent years, the MSA Coalition has greatly expanded the scope of its programs. From planning and hosting the world’s largest MSA patient and family conference, to funding more than $2 million in research seed grants, and providing important educational content such as the “MSA-What You Need to Know” document, the MSA Coalition’s volunteer Board of Directors has contributed countless hours to the cause. Additionally, Board members have attended scientific conferences around the world, set up personal fundraisers, written website content, liaised with medical and nonprofit experts, and more.
“Simply stated, the MSA Coalition has outgrown the ‘all–volunteer’ model which it pioneered in the MSA space dating back to 1989 when we were known as the Shy-Drager Support Group. Ten years ago, the Board of Directors, comprised of Dr. David Robertson, Dr. Thomas Chelimsky, Vera James, Judy Biedenharn and I developed the first iteration of our strategic plan focused on broadening our mission from primarily support and education to include a much stronger focus on meeting the needs of those impacted by the disease,” stated Don Crouse, Vice-Chair, the MSA Coalition. “This change in focus led to eight years of remarkable growth in revenue, services, and programs. In 2012 we relaunched our nonprofit as the Multiple System Atrophy Coalition with an expanded mission. 2013 was highlighted by the announcement of our global MSA research grant program and the awarding of our first research grants. Since then we have more than doubled our Board of Directors, increased our outreach to the global MSA community, doubled the size of our annual conference, and awarded over $2 million in research grants. As we grew, we realized that continuing to operate with an “all-volunteer” model would hinder our ability to provide patients and their families the best support and services possible. With that realization, the time was right to hire professional staff to help us take the MSA Coalition to the next level.”
The MSA Coalition support line will continue to be run by MSA Coalition volunteers with experience as MSA care partners. Those in need of emotional and educational support can continue to call (866) 737-5999. The Board remains passionate and committed to this cause and looks forward to maintaining relationships with the community as MCI USA provides necessary support to increase awareness and fulfill the MSA Coalition’s important mission.
About the Multiple System Atrophy Coalition
The Multiple System Atrophy (MSA) Coalition is a positive beacon of hope standing up to a little-known, rare, insidious disorder. Since 1989, the MSA Coalition has been devoted to improving the quality of life and building hope for people affected by multiple system atrophy by focusing on a four-pillar mission:
– Providing patients and caregivers with trusted and compassionate emotional support
– Educating patients, care partners and healthcare professionals with credible, critically important and relevant information
– Funding patient-centric collaborative research aimed at alleviating symptoms, slowing disease progression and discovering a cure
- Building a sense of community by connecting and unifying people affected by MSA.
Thousands of participants benefit from the annual MSA Coalition Family Conference, which is live streamed and posted online. With multiple online discussion groups and a dedicated support line, someone is always there to help. As the host of the first-ever Global MSA Advocacy meeting, the MSA Coalition works with other like-minded charities to foster a community of support and care, while also playing an important role in global MSA research efforts.
Learn more at http://www.multiplesystematrophy.org/ or call our support hotline toll–free at 866-737-5999 or our business line at 866-737-4999.
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 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 cure or remission from the disease.