MSA Coalition News – May 2014
2014 has been an exciting year for MSA so far, the first quarter has flown by!
The highlight of the first quarter as always was March MSA Awareness month. Once again local events and fundraisers were held all across the USA and around the world. Thanks to so many of you who initiated these events in your area. Thanks to your efforts Multiple System Atrophy and the work of the MSA Coalition are becoming more widely known. We can see this through the increases in our donations and in the number of calls and email inquiries we are receiving.
I’m very excited by our research grant program which is continuing to grow. Late last year we received 8 research proposals and were able to fund 5 of them. Press releases went out in January/February announcing each of the 5 projects. We will be asking for progress reports on all of them in the near future and will keep you updated.
See:
The Multiple System Atrophy Coalition® Awards $219,000 to Fund Five Promising MSA Research Projects
http://www.prweb.com/releases/2014/02/prweb11544598.htm
Buoyed by this initial success, The MSA Coalition reached out to CurePSP to ask them to partner with us by providing a matching research grant of $50,000. Within 3 weeks of announcing our call for research proposals we had received 9 submissions requesting a total of $800,000. These were reviewed by the MSA Coalition Scientific Advisory Board who have recommended two proposals to share the available $100,000. These will be announced via press release by mid-year.
This overwhelming response to our two research grant proposal calls so far tells us there is no shortage of interest in MSA by the research community. The only shortage is funds to cover it all. Please spread this message and keep asking for support for vital MSA research.
It’s not too late to donate to our March 2014 MSA Awareness Month Fundraiser on Crowdrise.
https://www.crowdrise.com/March2014MSAAwarenessMonth/fundraiser/Multiple-System-Atrophy
Checks can also be sent to:
The MSA Coalition
9935-D Rea Road #212
Charlotte NC 28277
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Another highlight this year was the MSA Research conference held in London in late February. Some of the top MSA researchers from Europe were there to present about their latest projects. There was also some stimulating discussion amongst the researchers in between talks and during lunch and breaks. Several of the researchers provided their slides which I have added to the MSA Awareness website: www.msaawareness.org
I was excited to meet with leading MSA researcher Professor Gregor Wenning and staff of the Multiple System Atrophy Trust.
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This research news from Vienna Austria last week has provided a glimmer of hope that progression of MSA could be arrested with the development of a vaccine. This work will take time and lots of resources but is being well supported in Europe by a large grant from the European Union. This will be exciting to watch so stay tuned.
Vaccine to be developed and tested for Parkinson’s Disease and Multiple System Atrophy
VIENNA, April 28, 2014 /PRNewswire/ –
An international consortium of top European research teams has received significant EU funding for the development of therapeutic vaccines against Parkinson’s Disease (PD) and Multiple System Atrophy (MSA). Led by the Austrian biotech company AFFiRiS AG, the consortium will use a novel tandem strategy to advance the development of two therapeutic vaccine candidates in parallel. They are both unique in the potential for disease modification, something which is sorely missing in PD as well as in MSA. Both candidates target a protein called alpha-synuclein, which plays a key role in the onset and progression of PD and MSA. Additionally, the group attempts to identify biomarkers with diagnostic and prognostic value. Altogether, the consortium exerts medical and scientific key opinion leaders from Germany, France and Austria. The project SYMPATH has been awarded € 6 Mio. from the 7th Framework Program of the EU and will run for 48 months.
Read more here:
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I understand that a few of you are already planning to hold MSA events this summer. I encourage you to contact the MSA Coalition to get help in spreading the news, especially for larger events. We will be able to issue a press release and perhaps get you some items such as MSA Coalition t-shirts and pamphlets or banners. If anyone is planning a run or bike ride we can special order running or biking jerseys with the MSA Coalition logo. If any vendors you work with for your fundraiser require our IRS tax id and tax exemption letter this can be easily provided to you. Please contact us and let us know what you need. Our toll free lines are 1-866-737-4999 and 1-866-737-5999. You can also email Don Crouse dcrouse@msacoalition.org
Watch our website and facebook page for announcements soon about:
– The MSA Patient Conference 2014
– New additions to our board of directors
– A new revamped website
Thanks again and Happy Spring!
Pam Bower
Board of Directors
Multiple System Atrophy Coalition
“United to Defeat Multiple System Atrophy”
www.MultipleSystemAtrophy.org
Please LIKE us on Facebook: https://www.facebook.com/MultipleSystemAtrophyCoalition
pbower@MSACoalition.org
pbower@accesscable.net
Pam.Bower@MSAawareness.org