THE HARDSHIP OF MSA PATIENTS
M. Parkinson and Multiple-System-Atrophy (MSA) are neurodegenerative diseases belonging to the group of alpha-synucleinopathies. Currently there are no effective therapies to delay or stop their progression. To make matters worse, drugs used to treat symptoms of Parkinson's disease do not affect MSA. Moreover, the progression rate is much faster for MSA than for M. Parkinson. Hence, MSA patients are living in an even more dire state than Parkinson patients.
© Eliana Nachman
UNITED IN THE FIGHT AGAINST MSA
Due to the rarity of MSA, only a multicentric approach is promising. There are 10 clinics participating in our first reserach project:
- Beelitz clinics
- University hospital Dresden
- University hospital Düsseldorf
- University hospital Essen
- University hospital Heidelberg
- University hospital Jena
- University hospital Leipzig
- University hospital Marburg
- University hospital Münster
- University hospital Munich, LMU Munich
A NETWORK OF YOUNG MSA-RESERACHERS
We want to develop YAMSA e.V. into an international network of young MSA-reserachers. To continue this idea, we are going to present our initiative with a talk during the 2019 congress of the German Society for Neurology. Moreover, using the channels of the "Young Neurologists" we would like to improve our outreach and recruit new researchers. The Young Neurologists are the youth organisation of the German Neurologist Society.
WHAT DOES YAMSA WANT TO ACHIEVE?
According to our statutes, we as YAMSA e.V., want to promote and carry out more multicentric studies - our current project functions as a starting point for our fight against MSA. One of our long-term goals is to help create a national MSA-patient registry. We want to shine a light on MSA which does not receive sufficient attention in research or in the public eye.
WE ARE INTERESTED IN THE PATIENTS' OPINIONS
How should future therapies and clinical studies for patients with MSA and Parkinson's be designed?
How do patients with MSA and Parkinson's disease dream?
What reasons influence a patient with MSA or Parkinson's disease to participate in a clinical study?
Funding by the Hilde-Ulrichs-Foundation for Parkinson Research
YAMSA e.V. is supported by the Hilde-Ulrichs-Foundation. We received a grant of 4150 € which will be directly used to fund our current project. More information under Hilde-Ulrichs-Foundation.
Recruitment starts for our first study
We started recruiting our first patients suffering from MSA in January 2019 - initially in Marburg, Dresden and Beelitz. All clinics will have started recruiting patients with MSA by April 2019.
HILDE-ULRICHS-STIFTUNG FOR PARKINSON RESEARCH
The Hilde-Ulrichs-Foundation for Parkinson research is a Germany-wide point of contact at which patients with Parkinson's disease are able to receive independent counseling and information about how to cope with the disease. It is the first private charitable foundation that supports the development of non-medical treatments for Parkinson's disease. Biannualy, the foundation gives out at research price valued at 10,000 €. Moreover, it supports scientific research and engages in the education about the disease. The foundation was founded by Hermann Terweiden at the first World-Parkinson-Day on April, 11th 1997. It is named after Hilde Ulrichs, Terweiden's partner, which died from MSA.