MSA Coalition Highlights For 2018
While 2018 isn’t over, The MSA Coalition has already had a banner year! Here are a few of our key accomplishments and highlights.
The 2018 MSA Patient & Family Conference
Our annual patient and family conference was held in San Francisco in September. Over 150 people participated in person and thousands more tuned in for our livestream webcast. All of the presentations and Q&A discussions with medical professionals were very informative. If you missed it, videos of the event are still available at our web archive:
2018 MSA Patient and Family Conference Video Archive
MSA Coalition Funded Research Now Being Published
With your help, we have funded over $1.6 Million in research grants since 2013. We are very excited to report that some of these projects are now yielding important results. One great example of our research dollars at work is this biomarker project at UCLA which has made progress towards developing a simple blood test that may be able to diagnose MSA sooner and more accurately. This would help to greatly speed up and improve clinical trials as well as rule in or out the diagnosis for many families who are uncertain. More studies are still needed to validate the findings before this test could be made available:
Blood Biomarker Distinguishes Parkinson’s from MSA
The MSA Coalition Actively Supported Global Research and Advocacy Efforts
Earlier this year, we sponsored and attended the 6th International MSA Congress for researchers and clinicians. Additionally, we organized and hosted the first ever Global MSA Advocacy Meeting which was held in conjunction with the MSA Congress. In total over a dozen advocates representing MSA organizations from around the US and Europe participated in the collaborative advocacy meeting:
Multiple System Atrophy Coalition Sponsors the 6th International MSA Congress and Hosts 1st Global MSA Advocacy Meeting
The MSA Coalition’s Volunteer Work Is Building Hope For Those Living with MSA
Our participation at international conferences such as this has enabled us to make important connections with clinicians, researchers and pharmaceutical companies who are working towards bringing new therapies to those with MSA. Developing closer relationships enables us to act as the bridge between pharmaceuticals, researchers and patients, getting the word out about new clinical trial opportunities, and helping families recognize the vital importance of their participation. There is hope on the horizon!
First volunteers dosed in Phase I clinical trial of PBT434, Prana’s lead therapy for parkinsonian diseases
The MSA Coalition Builds Awareness For Our Rare Disease
From local and national government MSA awareness proclamations to ringing the New York Stock Exchange Closing Bell, the MSA Coalition provides leadership and support as we all try to build awareness for MSA, a rare disease affecting thousands of people around the world. But, did you know, the single most impactful way to raise awareness is for you to create a fundraiser for our cause. When people donate to The MSA Coalition because of your fundraiser that makes them an active supporter of the multiple system atrophy cause.
Our Most Important 2018 Accomplishment Will Occur Between November 27 (Giving Tuesday) and December 31! We Need Your Help To Make It Happen!
There is still much work to be done and we now look towards 2019. To enable us to continue to fund research, to sponsor educational conferences, to provide trusted emotional support for families through our dedicated help line and facebook forums, and to build hope for the MSA community, once again we are asking you to partner with us on this journey. Our goal is to raise $800,000 this Holiday Giving Season. Everybody needs to chip in to make it happen. The MSA Coalition will provide detailed directions on how to maximize matching dollars. Stay connected with us and help us reach our goals. We can’t do it without you.
Sign Up For The “Holiday Hope For MSA” Campaign on Crowdrise Today!
Fundraising Will Begin on Giving Tuesday, November 27th.