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The Orioles and Multiple System Atrophy Awareness

The Orioles and Multiple System Atrophy Awareness

Written by Steve Gorman

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.

Learn more about MSA and how it has impacted the Gorman family.

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.

 

REPORT FROM THE 5th INTERNATIONAL CONGRESS ON MULTIPLE SYSTEM ATROPHY SPONSORED BY THE MSA COALITION

REPORT FROM THE 5th INTERNATIONAL CONGRESS ON MULTIPLE SYSTEM ATROPHY SPONSORED BY THE MSA COALITION

 

Dr. Sandrine Wauters, PhD researching multiple system atrophy

Dr. Sandrine Wauters, PhD

A Guest Blog Post Written by Dr. Sandrine Wauters, PhD

Salerno, Italy, April 22-23, 2016

Attending the Salerno 5th International Congress on Multiple System Atrophy was very beneficial to my multiple system atrophy research in many ways.

Firstly, by allowing me to present my poster of recent unpublished data I collected while being funded by the MSA Trust for the past 18 months. I was able to talk to different scientists about the caveats of certain results which gave me more ideas in how to structure the paper and future experiments.

Secondly, those who were expert in mitochondrial dysfunction gave me some guidance in how to interpret certain data which they have replicated independently. This has given me confidence in the technique I used and how to understand what the results signify in the field.

Thirdly, certain talks presented at the congress mentioned the impact of the Mitsui. J et al., (2013) paper which I referenced in my poster and which sparked my project. This showed how scientists in this field are all focusing on similar aspects of MSA pathogenesis which confirms its importance and can spark new collaborations.

Dr. Sonja Scholz from the USA shared the genetic advances in MSA in reference to a Genome Wide Association Study (GWAS) where genes linked to different cellular processes were mentioned, ranging from lipid metabolism to vasoconstriction. My knowledge of MSA registries was significantly expanded after hearing talks from scientists across the world. These registries are beneficial to research and clearly involve a lot of organisation and dedication.

I was also able to put a face to the name of many neuroscientists whose research I have read about or those who my colleagues collaborate with. I find that introducing yourself to fellow researchers can start strong collaborations and support networks. This also was a key theme of the congress – team work – and everyone sharing and supporting each other. We all have the same ultimate goal of finding a treatment or even a cure for MSA.

Hearing from Jill Lyons, an MSA nurse specialist in the UK was very touching as sometimes as a research scientist you can become so focused on your project aims that it is invaluable to be reminded that we have a whole team of people who work towards our mutual goal. This sense of community was a very powerful take home message from this congress.

I would like to take this opportunity to thank the MSA Coalition for sponsoring the 5th International MSA Congress and awarding me a young investigator travel grant so that I might present my research poster. I am honoured and privileged. I was also very happy to see Pam Bower again at the congress and to update her on my research. We would not be able to do our research and make a difference without the MSA Coalition’s continued and invaluable support.

About the Author:

Dr. Sandrine Wauters, PhD, currently works at the Queen Square Brain Bank, University College London (UCL) as a Senior Research Technician under supervision of Professor Janice Holton and collaboration with Professor Henry Houlden (UCL) and Dr Iain Hargreaves (UCL).
She has received funding for her MSA research from the MSA Trust (UK) and from the King Baudouin Foundation. Her research poster presented at the 5th International MSA Congress was entitled “Mitochondrial dysfunction in multiple system atrophy” by Wauters SC, Kiely A, Houlden H, Hargreaves I and Holton JL – UCL Institute of Neurology, Queen Square Brain Bank for Neurological Disorders and UCL Institute of Neurology, National Hospital for Neurology and Neurosurgery

It Takes a Community to Fight Multiple System Atrophy

It Takes a Community to Fight Multiple System Atrophy

A Multiple System Atrophy Caregiver Speaks for Her Husband

The Anderson Family Fights Multiple System Atrophy togetherWhen Jim and Marilee Anderson discuss their experience with Multiple System Atrophy, Marilee speaks for both of them. While Jim’s cognitive skills are as sharp as ever, his speech has become nearly inaudible. As he whispers, Marilee understands perfectly, relaying and amplifying as Jim nods slightly in agreement.

In recalling Jim’s diagnosis, Marilee relates an experience familiar to many with Multiple System Atrophy.

“In 2008, Jim began experiencing symptoms that his primary care physician couldn’t explain,” says Marilee. “Then in 2010, a neurologist diagnosed Parkinson’s disease, but it never seemed to fit.” As symptoms progressed that year and the Andersons continued seeking answers, they got an important clue after an exam at a Parkinson’s center. Marilee requested a copy of the doctor’s notes and saw one simple line that changed their lives: “Cannot rule out MSA.”

Marilee got online, learned that MSA is Multiple System Atrophy, and began reading. “At first, it was like the clouds lifted – it was a relief to see an exact description of his condition,” says Marilee. “And then there was this overwhelming feeling of dread because I read that there’s no cure and that Jim’s lifespan was more limited than we had thought.” The Parkinson’s center confirmed a diagnosis of Multiple System Atrophy in a follow-up visit.

As the disease progressed, it took more and more away from Jim. “He was getting weak, and quickly,” says Marilee. “By June 2011 he had to quit his job. He was frequently dizzy and started to fall – often. It was as if someone had just taken his balance away from him. And there were the wild blood pressure swings, like one that caused him to collapse in church and have to be rushed to the emergency room – where absolutely nobody had ever heard of Multiple System Atrophy.”

Since then, Marilee has been prepared to teach every doctor Jim sees about MSA and where to go for more information – specifically, to the MSA Coalition. “And it’s not just doctors who need to understand,” says Marilee. “It’s also family and friends. We’ve found that some friends won’t come over as often, and we understand why visits can be difficult. Family and friends who do stick with us are something Multiple System Atrophy can’t take away from Jim. It’s building love that is tried and true and tested by fire, and that’s the best love of all.”

Marilee and Jim were joined at the most recent annual MSA Coalition Conference by “Team Jim” – their son Joel, two of their dearest friends and three family members. “Being here together and sharing information with others in the same situation we’re in has made such an impact on us,” says Marilee. “In their literature and in their conference, the information the MSA Coalition provides is consistent and well-researched, and comes from a medical perspective, a caregiver perspective and an ‘anyone who wants to know more’ perspective.”

Marilee says she can’t point to any single aspect of the MSA Coalition as being most important. “You can’t fund research about a disease nobody knows about, because it’s the awareness of the disease that drives interest in researching it,” says Marilee. “And you can’t really know Multiple System Atrophy without a force like the MSA Coalition giving it a face. It all comes together in a synergistic way that gives the Coalition great value. I’m donating this year, and I hope others will join us in that.”

To learn more about Multiple System Atrophy, The MSA Coalition’s efforts to battle this rare disorder and how you can help, please visit www.multiplesystematrophy.org.

To learn more about how you can support The MSA Coalition’s efforts to battle this rare disorder and donate now, please visit www.multiplesystematrophy.org/donate-now.

REPORT FROM THE 5th INTERNATIONAL CONGRESS ON MULTIPLE SYSTEM ATROPHY SPONSORED BY THE MSA COALITION

A Brother’s Fight With Multiple System Atrophy

Steve Gorman's brother, Jim Gorman, has multiple system atrophy

Steve’s brother, Jim Gorman

Hi friends,

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 is fighting multiple system atrophy with his family in his corner

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 Gorman playing hoops with his younger brother Steve Gorman

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 Gorman with his brother Jim at an Orioles game

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.

REPORT FROM THE 5th INTERNATIONAL CONGRESS ON MULTIPLE SYSTEM ATROPHY SPONSORED BY THE MSA COALITION

A Caregiver to MSA Caregivers

The Will to Help Never Leaves

Vera James lost her husband, Fred, to Multiple System Atrophy in 2003, marking her transformation from experienced caregiver to vital resource for countless others. In addition to serving on the MSA Coalition board of directors, Vera answers calls on an MSA Hotline in her home, at all hours – and that, she says, is just fine.

VJames-Appreciation-FBVera’s introduction to Multiple System Atrophy mirrors the experience of many who have dealt with this disease. “Fred was initially misdiagnosed with Parkinson’s, and when we finally got a correct diagnosis, the physician knew very little about Multiple System Atrophy,” says Vera. “I found the information I needed online, first through a Yahoo! MSA support group and then from the MSA Coalition, which the Yahoo! group pointed me to.”

As Fred’s condition deteriorated, Vera used the information she received to sharpen her caregiver skills. “At first, he could do most everything for himself,” she says. “But I gradually took over giving him baths, helping him get dressed, helping him get out of chairs, and eventually speaking for him and even rolling him over at night so he could get a little more rest.”

Through it all, Vera says, “Multiple System Atrophy couldn’t take away our love for each other. If anything, the disease brought us closer together. We learned a lot about our commitments to each other and the meaning of our wedding vows. And even though it took Fred, Multiple System Atrophy could not take the fact that I care deeply about those who have this disease. I’ve channeled my passion since then to helping others face this disorder.”

In fact, Vera attended her first annual MSA Coalition Patient/Caregiver Conference shortly after Fred’s passing; it was the first of the conferences held near her home. As a follow-up to conversations she had there, Vera agreed to the installation of a toll-free support line in her home, followed by an appointment to the MSA Coalition board.

As a board member, Vera wears multiple hats, from fulfilling requests for memorial envelopes to mailing DVDs and printed information to assisting with the annual conference set-up, which is especially complicated given the special needs of attendees. When asked to name the most important aspect of the MSA Coalition, Vera says: “Everything. The research is fantastic, and grants have grown exponentially thanks to generous donations. The information we provide is absolutely essential to people who are dealing with this rare disease. The conferences enable patients and caregivers to form deep bonds with others they would otherwise never have met. All aspects of the MSA Coalition are important – this is full-spectrum support.”

Year-round, Vera answers hotline calls from patients, caregivers, hospices and physicians, an activity of which she never tires. “I get to be a lifeline, helping to take away fear with information,” she says. “Most first-time calls are from newly diagnosed patients or caregivers whose loved one has just been diagnosed. Then they call back whenever they need more information about equipment, speech therapy and what to do for this and that. What’s most common among the callers is the love that drives them to make things better and the determination to keep going. On a few occasions, the caller has been just really down at the moment and says, ‘You don’t know what it’s like.’ I assure them that I do know what it’s like, telling them, ‘I’ve been there’.”

To learn more about Multiple System Atrophy, the MSA Coalition’s efforts to battle this rare disorder and how you can help, please visit www.multiplesystematrophy.org.

Support Vera’s fundraiser on CrowdRise! Please visit: https://www.crowdrise.com/MultipleSystemAtrophyCoalition/fundraiser/verajames