A NETWORK OF YOUNG MSA-RESERACHERS
We strive to develop YAMSA e.V. into an international network of young MSA-reserachers. To continue this idea, we presented our initiative at the annual meeting of the German Neurological Society. 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 Neurological Society.
THE HARDSHIP OF MSA PATIENTS
Parkinson's 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 Parkinson's. 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 13 clinics participating in our first reserach project:
- Beelitz clinics
- University hospital Dresden
- University hospital Düsseldorf
- University hospital Essen
- University hosptial Göttingen
- University hospital Heidelberg
- University hospital Jena
- University hospital Leipzig
- University hospital Marburg
- University hospital Münster
- University hospital Munich, LMU Munich
- University Hospital Regensburg
- University Hospital Rostock
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 enhance public awareness on MSA which does not receive sufficient attention in research or in the public eye.
HILDE-ULRICHS-STIFTUNG FOR PARKINSON RESEARCH
The Hilde-Ulrichs-Foundation for research on Parkinson's disease is a Germany-wide point of contact for patients with Parkinson's disease, providing 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 education about Parkinson's. 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, who died from MSA.
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?
As a charitable foundation, we rely on donations to carry out our projects. Non of our members are paid for their help, they all work on an honorary basis. We are happy to inform you about the options to support us in a personal conversation. Just send us a message at firstname.lastname@example.org. All donations are tax-deductible and we can issue donation receipts.
Our Donations Account:
IBAN: DE70 8704 0000 0707 1038 00
If you would like to participate in our projects, as a researcher (any background), as a student or as a clinician, get in touch at email@example.com. We are always looking for new members for our network because this is one of our overarching goals. We're confident that only together we can advance the research into MSA and therefore getting closer to reduce the burden of patients. To participate, you don't need to be a member of our foundation.
BECOMING A MEMBER
Our projects rely on a strong network of MSA-Researchers. We are always looking for new members to expand this network and we're offering two options:
- as an active member (members that would like to take over responsibilities within YAMSA e.V.)
- as a supporting member (members that would like to support the foundation financially)
Our membership application can be found here.