Research Project Seed-Funded by MSA Coalition Awarded Additional Funding of 100,000 Euros from the Dr. Johannes and Hertha Tuba Foundation

Research Project Seed-Funded by MSA Coalition Awarded Additional Funding of 100,000 Euros from the Dr. Johannes and Hertha Tuba Foundation

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.

Informal Poll Shows Toll of MSA on Patients

Informal Poll Shows Toll of MSA on Patients

We conducted a poll on the Patients Journey Facebook Group page, and over 250 MSA patients participated. The question posed was:

“MSA ravages our bodies but it also takes a huge toll on our mental health. What loss from MSA do you or have you feared most?”

While this was not a scientific study, it does help convey challenges, concerns, and fears shared by many MSA patients. The chart above summarizes the most agreed-upon losses (number of “votes” noted)

Additional answers and comments included:

  • Loss of relationships such as family or friends
  • Loss of hobbies such reading, gardening, knitting, etc.
  • Loss of being able to help around the house – leaving all the tasks you used to do to your caretaker
  • Loss of communication
  • Loss of freedom from pain
  • Having friends with MSA pass away
MSA Coalition Announces Prime Sponsorship of 2021 International Congress of Multiple System Atrophy

MSA Coalition Announces Prime Sponsorship of 2021 International Congress of Multiple System Atrophy

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.