We are excited to announce that The MSA Coalition has launched a new Advocacy Committee! While The MSA Coalition has been advocating for the MSA community in a variety of ways for many years, this new committee will focus specifically on developing and implementing an annual advocacy agenda that will advance the Coalition’s mission through public policy, advocacy, and community initiatives. For example, the committee plans to educate members of Congress and other governmental officials about the needs of the MSA community to obtain more rapid access to federal benefits such as Social Security Disability and Medicare.
One of the current projects of the Advocacy Committee is our participation in the Neuroscience Working Table which is composed of patient groups, manufacturers, providers, and researchers with a common interest in advancing legislative reforms to foster development in neuroscience research and treatment. We are delighted to have a “seat at the table” for this national effort, along with organizations such as Cure PSP, the Michael J. Fox Foundation, the American Brain Coalition, I AM ALS, and the American Academy of Neurology.
Did you know that Central Nervous System drugs take 20 percent longer to develop and approve than other drugs? The Government Accountability Office has reported that in recent years, FDA reviewers of new drug applications for neurological diseases denied more requests for breakthrough therapy designation (and granted fewer), compared to other disease areas. The Working Table is currently advocating for legislation to create a Neuroscience Center of Excellence (NCOE) within the FDA that would, among other things, place a stronger emphasis on drug development tools for neurological treatment and cures, and increase patient-focused drug development for these diseases. Put simply, the goal of an NCOE would be to accelerate the development of neurological treatment and cures.
On December 16, 2021, Senators Collins and Lujan introduced a bill to create an NCOE at the FDA (S. 3427, “the Neuroscience Center of Excellence Act of 2021”) and The MSA Coalition has signed on to several letters from the Working Table to Members of Congress supporting the legislation. More information about the Working Table can be found at its website: https://neuroscienceworkingtable.org/.
If you have any questions about our advocacy work or if you have any government contacts at the federal or state level that could help open doors for us to advocate for the MSA community, please reach out to Patricia Libby Thvedt, Chair of the Advocacy Committee, at plibby@msacoalition.org. We look forward to keeping you updated on our advocacy work during 2022 and beyond.
Life has a way of defining us rather than vice versa. Each and every day there are innumerable interactions, any of which could have a different outcome. The goal is to be prepared whichever directions those interactions might take, which we all know is easier said than done.
Sometimes those interactions are job-related, but often they occur in our daily lives. These interactions might be positive; meeting a new friend or finding a new place to eat. Others, not so much; seeing an accident or encountering some environmental danger.
Which of the many interactions over time cause the brain of a future MSA patient to start producing or altering the alpha-synuclein being produced, thus causing the neurodegenerative disease multiple system atrophy?
[This is written for a blog post on the Coalition’s web page but is for any and all visitors who come for the first time. Please remember when reading these bulleted points there is a reason for this post; advocacy is an on-going process and each time may help bring one, maybe ten, into the advocacy fold]
It’s rare – 4 in 100,000 patients will be diagnosed with MSA, 8-9 in 100,000 for those above the ages 40-45.
It is sporadic – To this point no known cause, genetic or environmental, has been found; to this point it is not known to be hereditary
No treatment – there is not one treatment that has yet made it past Phase 3 status in the clinical trials process
No cure – Yep, that’s right! It is a d____ s________.
How to solve these problems – raise awareness of the disease and monies for the premier funding entity in the MSA community, the Multiple System Atrophy Coalition, and its research grant program.
Raising awareness is a tricky proposition and many advocates have tried multiple methods to bring attention to the disease and sometimes to raise money. There are marathoners, half-marathoners, runners, bicyclists, lemonade stand entrepreneurs, and many others. All help raise awareness and oftentimes money. People wanting to beat this Beast.
Two blues aficionados and one blues artist extraordinaire, offer the BEAT MSA! Fundraiser on October 3, 2019. My wife Colleen, who brainstormed with me this entertainment approach to fundraising, thought raising awareness was best accomplished when people are enjoying themselves. This event, held on World MSA Day, will bring together some of the best in local and national blues artists, good food (included in ticket price) and silent auction items from college basketball programs and blues artists. There will be bands playing, artists soloing, wonderful blues singers singing and guitarists playing. And we can’t forget the skins or the great bassists laying down the beat.
We want it to be an enjoyable and memorable night! Come join us or email me if you have any questions or want to help.
The pictures here show Colleen’s joy at crossing Walt Disney World off her bucket list; this trip in late December 2013 was just two months before our second fundraiser – but that’s another story.
Written by Larry Kellerman, MSA Coalition Board of Directors & Support Line Volunteer
To mark the beginning of Multiple System Atrophy Awareness Month The MSA Coalition has been selected by the NYSE to ring The Closing Bell on March 5, 2018 at 4:00 p.m. ET. This highly visible and prominent event will help to bring much need awareness to a little known, rare and terminal disorder.
New York, NY, March 5, 2018 –The Multiple System Atrophy (MSA) Coalition today announced it was invited to ring The Closing Bell at the New York Stock Exchange on March 5, 2018 at 4:00 p.m. ET. The event is a symbolic and high-profile way to “ring” in MSA Awareness Month which is observed every March.
The Closing Bellfor the New York Stock Exchange receives excellent media coverage and has a large social media following including 1.58 million followers on Twitter, more than 288,000 Likes on Facebook, and 66,000 Instagramfollowers. Photos of The Closing Bells are available via Associated Press/New York, Reuters America, Getty Images, Bloomberg Photo and European Press Agency. B-roll of the NYSE trading floor is available five minutes prior to the Opening and Closing Bell feeds. The Closing Bell feed, which begins at 3:58 p.m. ET, is available via Encompass loop #4090. Media seeking footage via The Switch should contact NYSE Broadcast at (212) 656-5483. The MSA Coalition will be sharing photos and videos of this event on its social media platforms, as well.
“The NYSE is very pleased to have the Multiple System Atrophy Coalition ringing The Closing Bell,” said NYSE representative. “It is important to support non-profits, especially when they represent a cause with major unmet needs. We hope the exposure our platform provides gives the MSA and rare disease communities a big boost in their awareness efforts.”
MSA is a rare and terminal neurodegenerative disorder that afflicts approximately 13,000 Americans and tens of thousands more around the world. MSA strikes in mid-life and has a life-expectancy of 5-9 years after diagnosis. It is characterized by Parkinsonian, autonomic nervous system, and cerebellar symptoms. Because it is so rare it is poorly understood, and an accurate diagnosis can take several years. After diagnosis, some symptoms can be treated to improve quality of life, but no cure is available.
“The MSA Coalition is very honored to ring The Closing Bell at the NYSE on behalf of the entire global multiple system atrophy community,” said Don Crouse, MSA Coalition Vice-Chairman. “We are extremely grateful to the New York stock Exchange for giving us a prominent platform to bring much needed visibility to this rare and always fatal disorder. We are also pleased to be joined at this ceremony by patients and caregivers, MSA NJ, and The MSA Awareness Shoe. Hopefully, as The Closing Bell rings on March 5thit will bring hope to the MSA community that advocates are working on their behalf to improve awareness and that the world is starting to listen.”
Other significant MSA Awareness Month activities being sponsored and led by the MSA Coalition include its primary sponsorship of the 6thInternational MSA Congress (March 1-3 in NYC), which is the single most important gathering of MSA researchers and advocacy groups; and, hosting the 1st MSA Global Advocacy Meeting to be held in conjunction with the MSA Congress. The goal of the advocacy meeting is to bring together MSA and related charities to discuss key activities and challenges, and to develop coordinated plans for advancing the mission to support the MSA patient community. Additionally, The MSA Coalition along with other MSA charities are supporting a nationwide campaign to have all US states declare March Multiple System Atrophy Awareness Month. March is also a big month for individuals affected by MSA to set up fundraisers in support of their selected charity.
I’ve been to a lot of Orioles games in my life, both at Memorial Stadium and at Camden Yards. They all fall into two categories: 1) O’s games, and 2) O’s games with Jim.
I’ve always greatly preferred the latter, as our Orioles fandom has long been a connector for us. Games with Jim always felt more important, and with good reason.
Growing up nine years apart, there weren’t an awful lot of things we could enjoy together. The O’s were the one thing we could always talk about, vent about, get excited about—in short it was the one thing we were always able to share.
Our family moved to Kentucky in 1975, but Jim was already at Morgan State by then, so he stayed behind in Baltimore. Sadly, I went years without seeing a game in person.
But, anytime the O’s were going to be on national TV, Jim would call to say he was going to the game, and to be sure to look for him. I wouldn’t miss a pitch. He was always able to find a camera somehow, and seeing him on TV, even for a few fleeting seconds, made me feel like I was there too in a way. It eliminated the 700 mile distance between us, and also deepened my affection for both the team and the city.
Now, as Jim fights his battle against Multiple System Atrophy, an Orioles game is once again the focal point for our family. On Sunday, June 5, 2016, 35 members of the Gorman family will be at Camden Yards helping Jim and the Orioles bring awareness to Multiple System Atrophy, a rare and terminal disease affecting some 13,000 Americans.
Please donate to help the Orioles and Gorman family as they raise money to research MSA treatments and a cure.
About the Author:
STEVE GORMAN is a founding member and drummer for the American rock band The Black Crowes, selling more than 20 million albums worldwide and touring for two decades. Since 2014, Steve is host of his own sports/music talk show, Steve Gorman SPORTS!, broadcast nationally on Fox Sports Radio, part of the iHeart Media network. He lives in Nashville, TN with his wife of 20+ years and their two children.
If you’re reading this, you’ve already taken a step towards learning more about Multiple System Atrophy (MSA), and for that I am grateful.
Here’s what you need to know:
Multiple system atrophy is a neurodegenerative disorder that affects both men and women, usually starting in their 50s or early 60s. MSA is similar to Parkinson’s Disease, but with more widespread effects on the brain and body.
Multiple system atrophy is rare, and it is fatal. Money to research a cure is desperately needed.
There is no cure.
My brother, Jim, was diagnosed with MSA two years ago, following five years of mysterious symptoms, countless tests, endless questions, and incalculable frustration as MSA was steadily chipping away at his quality of life.
My entire family shares the sadness and helplessness that accompanies watching Jim endure this disease.
Jim Gorman and his family
In the past two years, his condition has deteriorated rapidly. The most basic elements of every day life, the things that we all take for granted, have been permanently stolen from my brother. Jim was forced to stop working many months ago. His speech has been greatly impacted, as has his ability to simply get around. From initially walking at a slower pace due to a loss of balance, to then using a cane, and then a walker, to now making the full time transition to a motorized wheelchair…this disease takes everything away.
For Jim’s wife, Bev, and their adult children who live nearby in Baltimore, this illness provides a brutally harsh reality: what was, a short time ago, a ‘day to day’ checklist has rapidly shifted to a ‘minute to minute’ checklist as his needs become constant. The progression of MSA is relentless, and it is unstoppable.
Multiple System Atrophy, simply put, removes all options.
Jim and Steve Gorman playing hoops
Anger, denial, and sadness still come to me, daily, in waves. I am heartbroken in a way that I have never known before. Jim, who is nine years older, has long been my North Star, guiding me with unconditional love, acceptance, and empathy. In my adult life, I’ve never made a significant personal or professional decision before checking Jim’s views and insight. My son carries James as his middle name, in fact. And I am just one of many who look to Jim as the “go to guy” in their lives. As a son, a brother, a friend, a co-worker, and most importantly husband, father, and grandfather, Jim’s positive impact upon all of us is impossible to overstate.
Steve and Jim Gorman at an Orioles game
My hope is that by sharing our story and by raising awareness of multiple system atrophy, we can generate donations that will help provide researchers with the means to develop a cure. It is a painful reality that I can’t say this effort will help my brother, but doing so is a meaningful way to honor a man whose positive and loving influence in my life is truly immeasurable.
Thanks for reading and, on behalf of Jim and my entire family, thanks for your support. If you want to help support much needed research to ultimately find a cure for multiple system atrophy please donate today!
Steve
About the Author:
STEVE GORMAN is a founding member and drummer for the American rock band The Black Crowes, selling more than 20 million albums worldwide and touring for two decades. Since 2014, Steve is host of his own sports/music talk show, Steve Gorman SPORTS!, broadcast nationally on Fox Sports Radio, part of the iHeart Media network. He lives in Nashville, TN with his wife of 20+ years and their two children.
they occur in our daily lives. These interactions might be positive; meeting a new friend or finding a new place to eat. Others, not so much; seeing an accident or encountering some environmental danger.
Two blues aficionados and one blues artist extraordinaire, offer the BEAT MSA! Fundraiser on October 3, 2019. My wife Colleen, who brainstormed with me this entertainment approach to fundraising, thought raising awareness was best accomplished when people are enjoying themselves. This event, held on World MSA Day, will bring together some of the best in local and national blues artists, good food (included in ticket price) and silent auction items from college basketball programs and blues artists. There will be bands playing, artists soloing, wonderful blues singers singing and guitarists playing. And we can’t forget the skins or the great bassists laying down the beat.
