Steve’s brother, Jim Gorman
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!
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.
Every March is Multiple System Atrophy Awareness Month and represents the ideal opportunity for the MSA community to unite in creating awareness for this rare and fatal neurodegenerative disorder.
Charlotte, N.C. – March 1, 2016: The Multiple System Atrophy (MSA) Coalition today announced the kickoff of Multiple System Atrophy (MSA) Awareness Month. In 2010, March was first officially declared as MSA Awareness Month. Since then, this annual event has grown to be a rallying point for the multiple system atrophy community, when thousands of patients, caregivers and advocates internationally join together to spread Multiple System Atrophy awareness and raise funds for the cause. The nation’s oldest and largest nonprofit dedicated to the disease, the Multiple System Atrophy Coalition, is encouraging everyone to support MSA Awareness Month to better educate the public who may not know about the rare disease, and to aid in fundraising efforts for increased research, advocacy, support and education resources for patients and families affected.
The Multiple System Atrophy Coalition honors this month, which blossomed from an idea first put forth by Bob Summers of Murfreesboro, TN whose wife Susan was afflicted with multiple system atrophy and passed away after a valiant battle. In his first Facebook post proposing the idea, he shared, “the first day of spring falls during this month, a time of renewal or rebirth. It seems to be a fitting time of year to reflect and dream big about our role to promote awareness and raise money for the much needed research.” As a former high school basketball coach, Bob Summers also suggested that all should wear the color purple during this month to emphasize the collective team aspect of raising awareness.
Support MSA Awareness month during March. Some ways you can get involved this month:
- Host a fundraising or education event or create an online fundraising page to share with family, friends, colleagues, classmates, and all contacts.
- Show support for those battling MSA by wearing purple every day in March, while telling everyone what the purple clothing represents.
- Update personal social media platforms with MSA awareness cover photos or badges; share personal MSA stories or posts from the MSA Coalition to show support.
- Write to local media about MSA Awareness Month through an editorial, blog post, or letter to the editor.
“We are passionate about raising awareness for this rare disease beyond those who are directly affected by it. It’s amazing, but oftentimes even friends and former coworkers of MSA patients know very little about MSA and they don’t know how to help,” stated Judy Biedenharn, Chairman of the MSA Coalition. “As our recently launched awareness initiative says, #MSACantTake our determination to find a cure. During this special month, we are hopeful the MSA community will unite to create a loud collective roar about the plight of multiple system atrophy patients and the urgent need to fund research and increase support. We encourage all affected by MSA to set up a fundraiser page so their network can have an easy way to help in the battle against this horrible disease.”
The disease takes many things from patients including their ability to work and be productive, to do simple daily activities like walking to the mailbox and eating without help, and ultimately life itself. The #MSACantTake campaign is intended to emphasize what Multiple System Atrophy Can’t Take from those affected by the condition, such as the will to fight, striving to make every day count, and the love of family and friends. Please join the conversation by using the hashtag #MSACantTake and sharing stories about the impact of MSA publicly on Facebook, Twitter and Instagram.
Facilitating and funding research is the main focus for dollars raised by the Multiple System Atrophy Coalition. Its scientific advisory board of renowned global MSA researchers, scientists and physicians collectively serve as the reviewing body for the MSA research grant program. In October 2015, the MSA Coalition announced that ten research grants were awarded, totaling $422,000. To see all the projects funded by the MSA Coalition, please visit https://www.multiplesystematrophy.org/research/funded-projects
For the remainder of 2016, the MSA Coalition’s planned highlights include selecting the recipients of the next round of funded MSA research grants, sponsorship of the fifth International MSA Congress for scientists and physicians in Salerno, Italy (April 22-23) and the next Annual Patient and Family Conference in New Orleans (October 14-15).
To donate easily via a mobile phone text – March4MSA – to 41444 and donate $5 or more.