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:
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:
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:
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!
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.
Hope for multiple system atrophy (MSA) patients has traditionally been tough to come by. From the 1960s, when MSA was first diagnosed (then known as Shy-Drager Syndrome (SDS)) through 2010, progress in understanding the cause and funds for critical research were limited. This is not to say progress was not made. Several research centers with autonomic disorder specialization and scientific organizations like the American Autonomic Society worked diligently conducting research to find the cause, develop diagnostic and symptom treatment protocols, and to test potential therapies. This work now serves as a strong foundational building block.
A New Era of Hope for Multiple System Atrophy
In 2011 the nonprofit SDS/MSA Support Group, which was first established in 1989, made the decision to expand its vision from solely supporting patients and caregivers to a 4-pillar mission which included emotional support for the MSA community, patient and physician education, advocacy and awareness, and encouragement and funding of the most promising multiple system atrophy research. Under the leadership of Don Crouse, Vera James, and Judy Biedenharn, and with the council of Drs. David Robertson and Tom Chelimsky, the organization changed its name to The Multiple System Atrophy Coalition® and embarked on building the premier national charity with world-wide reach for all affected by MSA.
Rebuilding a charity was not an easy task! It took countless hours by a very small group of dedicated volunteers to think through the changes and then implement them. Within a year major progress was made and continues:
Established the MSA Research Grant Program with dedicated funds and a world-class Scientific Advisory Board (SAB) in charge of vetting all research proposals received by The MSA Coalition.
Expanding the quality and reach of our Annual Patient and Family Conference, which now exceeds 175 in-person attendees and is live streamed globally to over 3,000 more viewers
Began expansion of the Board of Directors from five members to fifteen, broadening the range of skills and talents to support our mission.
By the end of 2011 the initial changes were complete and progress was being made. In the years prior to 2012 the charity raised an average of $10,000 to $25,000 per year. Beginning in 2011 with the announcement the new 4-pillar mission donations began to increase.
This increase in revenue has given The MSA Coalition the ability to begin making a real difference on behalf of those suffering from MSA. The biggest reason for hope in the eyes of many patients is research. Without research treatments and a cure will never be found. Over the past 4 years the MSA Coalition has funded 36 research grants from around the world totaling $1.6 million. Each and every grant has been scored and vetted by the SAB and many guest reviewers. If there is a potential conflict the reviewer recuses themselves from scoring and discussing that particular project. After the grants are scored and ranked The MSA Coalition Board of Directors reviews and votes to fund the top research grant applications. Where possible, connections on similar proposals are made in an effort to encourage collaborations among researchers and institutions. This process means that only the most promising research is funded by The MSA Coalition. As such, a diverse range of studies have been funded from 25 institutions and 30 researchers in 9 different countries. “Being good stewards of the money raised at the grass-roots level is always at the forefront of every financial decision we make. The MSA Coalition is extremely proud of its transparent and non-biased research grant process,” said Carol Langer, Treasurer of the MSA Coalition.
Other hidden benefits of the MSA Coalition’s research grant program that are bringing new optimism to multiple system atrophy research, include:
These grants often help fund the work of young investigators meaning they choose to focus their research on MSA rather than other areas.
Through the diligent work of Pam Bower, The MSA Coalition’s research committee chair, several global collaborations on important research have been started.
The infusion of grass-roots donated research dollars has provided all MSA researchers with new energy and optimism about finding better diagnostic markers, treatments, and potential cures.
In addition to funding research the MSA Coalition is also leading the push for better global collaboration and data sharing, which will speed the process of improving patients quality of life. In the past few years, The MSA Coalition has provided sponsorship funds for multiple research meetings including primary sponsorship of the past two International MSA Congresses, and MSA specific sessions at both the American and European Autonomic Society Scientific Meetings. These meetings are critical for researchers from around the world.
To further streamline use of resources The MSA Coalition encourages other advocacy organizations, foundations, and large donors to utilize and participate in its established research grant program. Due to the rare nature of MSA there are a limited number of researchers and potential grant applicants. As such, The MSA Coalition desires to share its SAB and grant application process to ensure that research funds from as many MSA charities as possible are being used in the most efficient manner and that researcher time and efforts are not being wasted on duplicative processes and work. Charities and foundations participating in the MSA Coalition research grant process are included as observers in the SAB review process, and can choose to fund the highly scored research proposals that meet their individual criteria for funding. It is an open and transparent review and voting process for all funders. These charities, Foundations, and Individuals have contributed substantially to past MSA Coalition grant programs: MSA Trust, Cure PSP, MSA NJ, Move Over MSA, the Rex Griswold Foundation, Patrick Costigan, and the Blandford-Rees Foundation.
To continue building hope for multiple system atrophy, The MSA Coalition is now leading an effort to unite multiple system atrophy charities in a collaborative consortium. On March 1-2, 2018, The MSA Coalition hosted the first ever MSA Global Advocacy Meeting in New York City in conjunction with the 6th International MSA Congress. The meeting, led by Cyndi Roemer, Chair of The MSA Coalition, featured lecturers by the National Organization for Rare Disorders (NORD) on how to build a consortium and by the Michael J Fox Foundation on their research grant program. The meeting also offered breakout sessions on various topics from advocacy, education and support, research, and fundraising. It concluded with sharing of learnings and new ideas and with plans to build a consortium of global cooperation among MSA advocacy organizations.
The past 5 years truly mark the beginning of an era of hope for those suffering from multiple system atrophy. The MSA Coalition promises to continue its transparent, mission driven work to build collaboration among advocates and researchers with the ultimate goal of delivering more than just hope. The desire is to shift from an era of hope to a new era of results that deliver improved and earlier diagnosis, both symptomatic and disease modifying treatments and ultimately a cure to eradicate MSA from the Earth!