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 firstname.lastname@example.org. We look forward to keeping you updated on our advocacy work during 2022 and beyond.
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.