FOR IMMEDIATE RELEASE
USA, CANADA, AUSTRALIA, SPAIN, ITALY & NEW ZEALAND – March 12, 2022
Today, the Board of Directors of Defeat MSA Alliance (USA), Defeat MSA/Vaincre AMS Canada, and Defeat MSA Australia and New Zealand, three of the six partnering members of the MSA United Consortium, have approved several grants to fund promising new research. The Consortium, which also includes two other charities, La Asociación Española Síndrome Shy Drager – Atrofia Multisistémica (Spain) and Combattiamo l’Atrofia Multisistemica (Italy), issued a global Request for Proposals (RFP) in July of 2021, inviting grant applications for new and novel studies in pathogenesis, biomarkers, and pre-clinical and clinical research areas. The funding of these seed grants was based on recommendations of the Consortium’s international Research Advisory Board.
For the Canadian and Australian charities, this represents an historic achievement, funding MSA research within their own countries, and it is especially remarkable, given that these two charities are in their infancy. Defeat MSA/Vaincre AMS Canada was founded in 2019, and Defeat MSA Australia and New Zealand were founded early in 2020 and 2021, respectively.
These research grants support an array of innovative studies looking at the underlying causes and biology of MSA, with the goal of developing new therapies and treatments for patients worldwide living with this devastating neurological disease. “Since the Consortium was founded, we have been able to increase our overall investment in research significantly, pooling our resources three-fold and targeting support for researchers who have been underfunded yet still are widely considered to be some of the best minds in the field,” said Philip Fortier, board member of three charities in the Consortium, adding that “by focusing on pathogenesis, in this round, we sought to invest in foundational research, paving the way forward, for future breakthroughs, and accelerating MSA research globally.”
Proposals were ranked higher if they helped elucidate connections to other disorders. Reviewers also considered whether studies were collaborative and demonstrated potential for external funding beyond this initial seed support. “One of the ways to foster a better quality of life for people living with MSA is to invest in vital research. We remain hopeful that the next breakthrough will emerge soon,” said Philip Fortier.
MSA United’s research objectives revolve around the recommendations set forth by the “Global MSA Research Roadmap,” an international meeting held in 2014. Attendees at that meeting included most of the world’s MSA experts, the leaders of advocacy organizations, (including Philip Fortier from Defeat MSA Alliance), representatives from the pharmaceutical industry, and other important stakeholders in the worldwide MSA community.
The primary task of the Roadmap was “to identify critical research areas where consensus and progress was needed to improve understanding, diagnosis, and treatment of MSA.” The chief organizers laid out nine focus areas and assembled eight working groups. Each group’s task was to develop a set of recommendations. Eventually, those recommendations were included in a report that was published in Neurology, the journal of the American Academy of Neurology (AAN). The entire paper can be read online here.
MSA United Consortium congratulates the recipients of these grants and acknowledges their contributions toward our mission to Defeat MSA:
Woojin Kim, PhD – University of Sydney, NSW, Australia
Naveen Kondru, PhD – Mayo Clinic, FL United States
Suzanne Bechstedt, PhD – McGill University, Montreal, QC, Canada
Yuhong Fu, PhD – University of Sydney, NSW, Australia
Tomasz Brudek, PhD – Bispebjerg and Frederiksberg Hospital, Copenhagen, Denmark
For more information about MSA United and its global research strategy, please visit: https://www.msaunited.org/
About MSA United Consortium:
MSA United International is a global consortium of charitable associations united in their dedication to fight Multiple System Atrophy. The Consortium aspires to balance: patient support, medical education, public awareness, scientific research, and community advocacy. All the charitable groups in MSA United are staffed entirely by volunteers. The members include:
- Defeat MSA Alliance (USA)
- Defeat Multiple System Atrophy/Vaincre L’Atrophie Multisystématisée (Canada)
- La Asociación Síndrome Shy-Drager – Atrofia Multisistémica (Spain)
- Combattiamo L’Atrofia Multisistemica (Italy)
- Defeat Multiple System Atrophy Australia and New Zealand, Ltd (Australia)
- Defeat Multiple System Atrophy Australia and New Zealand Trust (New Zealand)
About Multiple System Atrophy
MSA is a rare, fast, and fatal brain disease. MSA impairs the systems that regulate blood pressure, heart rate and bladder control – many of the basic bodily functions that people take for granted every day. People with MSA suffer from dangerously low blood pressure, speech and swallowing difficulties, sleep disturbances, breathing problems, rigidity, and tremors. The life expectancy is typically 5 to 10 years. Patients with advanced MSA often become bed-bound, unable to speak and rendered immobile. At present, there is no cure for MSA, no genetic tests to detect it, no therapy to slow it, and very few treatments to manage its debilitating effects.