The Multiple System Atrophy Coalition has exciting news! Over the next few weeks the Coalition will be rolling out it's new MSA Research Grant Request program. Over the past two year's The MSA Coalition's fundraising has increased and we are now ready to begin funding meaningful research toward finding a cause and hopefully a cure for multiple system atrophy. Over the years, the former SDS/MSA Support Group encouraged research by providing travel grants each year to the American Autonomic Society (AAS) meeting for the best MSA research submitted to the AAS for presentation. The travel program will continue, however, our new grant request program is different and very exciting as it is intended to directly fund MSA research.
The MSA Research Grant Program will:
Provide an online tool to prospective MSA researchers for submitting their research proposals. The grant program will be advertised to prospective researchers to create awareness for the program.
A scientific advisory board is being formed by the MSA Coalition to review all submitted proposals to identify the most promising research
Once per year the MSA Coalition will announce grant winners
Our goal is to announce our first research grant awards via press release on October 3, 2013 as part of World MSA Day. As we finalize details of the program we will determine rules for how much money will be awarded, etc. In the next few weeks, we will issue a formal press release announcing the grant program.
Thank you to everybody who has donated to the SDS/MSA Support Group and now The MSA Coalition. Our grass roots fundraising has enabled us to reach this important milestone and continued donations will be the key to its long-term success.
We want to close out Multiple System Atrophy Awareness Month by making the unified voice of the MSA community heard in Washington, DC and elsewhere! Writing letters to your elected officials about multiple system atrophy is an important way to spread awareness and to help ensure our lawmakers keep rare disease research in mind as they pass legislation.
Your letter doesn't need to be long, fancy or perfect. In fact, we have already provided an introduction, an explanation of MSA and a closing request. All you need to do is fill in your story. Write with your heart about how MSA has impacted your life as a patient, caregiver, family member, friend or healthcare provider. Here are a few tips and ideas for your letter:
Tell them where you live so the elected officials know you are their constituent (very important)
Tell them about the difficulties you faced in the process of being diagnosed with multiple system atrophy
Tell them how multiple system atrophy has impacted your life (physically, mentally, financially, etc.)
On March 1, 2013 a Flag of the United States of America was flown over the U.S. Capital in honor of Multiple System Atrophy Awareness Month. The request to fly the flag was made by the Honorable Richard Burr, United States Senator from North Carolina.
It was a very easy process and it was a great way to kick off MSA Awareness Month. In fact, anybody can contact their US Senator via their websites and request a flag to be flown over the U.S. Capital.
Today is March 21st – 10 Days Left to Contribute Your Voice
In the United States, there are only about 13,000 diagnosed patients with multiple system atrophy. That is 13,000 too many, but it points out the need for as many MSA patients, caregivers, family and friends, healthcare providers and rare disease advocates as possible to contribute their voices to make noise about the desperate need to find a cause and a cure for MSA. Here are some ideas on how to contribute your voice to MSA Awareness Month:
Like the MSA Coalition and other MSA groups on Facebook and “like” our posts so your connections can see posts about MSA. Even better, “share” our posts directly on your own Facebook pages.
Join Twitter and create a user name with MSA in it. For example @Bob-MSA. Use the search and discussion tools to find tweets about #MultipleSystemAtrophy and retweet them to your followers.
Most important – Write letters to your members of Congress (U.S. Representatives and Senators) to let them know you are their constituent and that you suffer from multiple system atrophy. Be sure to include the following in your letter:
Your full addressso they know they represent you
Explain what multiple system atrophy is (a rare and fatal neurodegenerative disease) and provide detail on how it is impacting your life
Explain the challenges in qualifying for disability insurance
Emphasis that there is no known cause or cure and that the NIH needs more money dedicated to rare disease research
Ask them to push the FDA to use existing protocols to approve orphan drugs quickly so the pharmaceutical industry and investors will become better motivated to research medications for rare diseases.
Buy and wear MSA bracelets
Post comments on blogs like this one to help add content and to show there is an active MSA community
Start a fundraiser on First Giving to support the Multiple System Atrophy Coalition
As individuals we can make a difference, but together we can be much strong!
February 28, 2013 is Rare Disease Day. Part of the Multiple System Atrophy Coalition's new mission statement is to advocate for MSA awareness. As such, Don Crouse, an MSA Coalition Board member will be heading to Washington, DC next week to participate in Rare Disease Day advocacy activities, including meetings with various Senators and U.S. representatives to discuss the need for greater research funding for rare diseases. The MSA Coalition will be joined by more than 200 other individuals representing many other rare diseases.
A great Olympic champion, Olga Korbut, is helping to raise awareness for Multiple System Atrophy. "Olga Korbut, also known as the "Sparrow from Minsk", is a Belarusian, Soviet-born gymnast who won four gold medals and two silver medals at the Summer Olympic Games, in which she competed in 1972 and 1976 for the USSR team." according to Wikipedia. One of Olga's teamates, the great Soviet gymnast Nikolai Andrianov, died last March (2011) at age-58, after a long fight with multiple system atrophy. Please follow Olga on Twitter along with the @MSACoalition and @MSAawareness to help spread the word about this rare global neurodegenerative disorder.
Every March is Multiple System Atrophy Awareness Month! As we dig into February it is time to start organizing and thinking about what we can do as a community and as individuals to raise public knowledge of our rare neurodegenerative disorder. Here is a list of activities to be considered for this March:
Write to your elected officials and tell them you suffer from a rare disease called multiple system atrophy. Tell how the disease impacts your life and ask for research funding. If you also suffer from neurogenic orthostatic hypotension (low blood pressure upon standing) tell them new treatment options are needed. Click here for an easy to use online letter submission tool!
Set up a meeting with your state representative during March to tell them about multiple system atrophy.
Purchase an American flag from your US Senator's website to be flown over the US capital one day in March. Request that it be recognition of multiple system atrophy awareness month.
Buy some purple light bulbs and use them for your porch/outdoor lighting for the month of March.
Write to your local newspaper and ask them to run a story about MSA.
Ask your state government to recognize March as MSA Awareness Month.
Wear a purple ribbon/or bracelet each day during the month.
"Like" various Facebook posts that are discussing multiple system atrophy.
2012 was an exciting year for the SDS/MSA Support Group and to celebrate our success the Board of Directors decided it was time to modernize our name. As such, the Board voted in early January to officially change our name to the Multiple System Atrophy Coalition. The Board feels the new name is very inclusive and reflects our growth beyond being just a support group. Today, the MSA Coalition is still actively involved in patient/caregiver support via our toll-free line, annual meetings and online forums, but is also active in these areas:
Research - The MSA Coalition has a dedicated Research Fund and encourages and supports meaningful research into finding a cause and a cure for MSA. 75% of all donations made to the coalition go directly into the Multiple System Atrophy Research Fund
Education - The Coalition is actively working on education projects to train healthcare providers on the differential diagnosis and management of multiple system atrophy patients.
Advocacy - The MSA Coalition is active in creating awareness around important issues affecting our community and the rare disease community in general. For example, in October 2012, members of the Support Group attended meetings on Capital Hill to raise awareness for MSA and neurogenic orthostatic hypotension as a partner in the Treat NOH Now Coalition.
Over the next few months we will be rolling out new materials and information about the Multiple SystemAtrophy Coalition. In fact, today Over 75 members of the MSA community voted on the new logo for the MSA Coalition, pictured to the right.
Let’s face it. Multiple system atrophy (MSA) is a rare disease with approximately 15,000 diagnosed patients in the US at any given time and as far as we know, there are no celebrities that are affected by MSA. This means as members of the MSA community we need to raise money and create awareness at a grass-roots level.
If we all contribute to advocate and talk about MSA, as a group we can make our voice heard. Here is a good example - Just this week the State of Ohio voted in unanimous fashion to name March officially as MSA Awareness Month. Just a few members of the MSA community accomplished this tremendous win through local efforts. Together we can make a big difference!
The SDS/MSA Support Group and First Giving
This week, thanks to help from Pam Bower The SDS/MSA Support Group got up and running on First Giving. First Giving is a website that makes it easy for charitable organizations to create fundraising accounts. Even better, the website makes it very easy for individuals to set up fundraising campaigns to support the charities of their choosing. In just the past three days, five fundraising campaigns have been set up with donations going to the SDS/MSA Support Group. Already, more than $900 has been raised.
After setting up the campaign, create awareness using First Giving social media tools and email tools. If fundraising isn’t possible for you right now, consider supporting a campaign that is already up and running:
The National MSA Support Group supports and participates in the Autonomic Disorders Consortium (ADC). The ADC was established in August 2009 as a Rare Disorders Clinical Research Consortium (RDCRC). The consortium is made up of physicians specializing in autonomic disorders, scientists, nurses, patients and support groups. The Autonomic Disorder Consortium is solely focused on finding new therapies to treat and cure these rare disorders, including multiple system atrophy.
The ADC mission is to study autonomic disorders, like MSA to develop novel treatments The ADC is multidisciplinary and draws strong support from our patients and their support organizations. The Consortium joins with patient support groups to harness the knowledge and energies of physicians and investigators in the major centers where these patients are cared for, so that they can discover ways to treat and to cure these diseases.
The ADC will conduct the following types of research in order to accomplish it’s mission of developing novel therapies aimed at improving quality of life, and ultimately finding cures for each autonomic disorder.
Patient Involvement in the Autonomic Disorder Consortium
MSA patients can get involved in two important ways: