July 19, 2015 - The Costs of Doing Nothing: Motor Neuron Diseases and How They Affect The Healthy

 

PLS Patient Teams with Johns Hopkins Scientist to Take a Harder Look at the Impact of ALS and PLS on Society 

Baltimore, MD (July 13, 2015) – From American baseball legend, Lou Gehrig, to world-renown physicist, Stephen Hawking, and the “everybody’s doing it” Ice Bucket Challenge, there are likely few people today not aware of ALS (Amyotrophic Lateral Sclerosis), also called Lou Gehrig’s disease. But what most may not know, is that ALS is only one in a group of five debilitating and all too often deadly Motor Neuron Diseases (MND) affecting millions of Americans, with over a hundred thousand diagnosed, annually. MND are not incurable, only severely underfunded and American taxpayers end up paying the price along with the patients. To break down the devastating, ongoing impact to patients (and to society) and to offer solutions, a newly diagnosed MND patient is teaming up with Nicholas Maragakis, M.D., Professor of Neurology at Johns Hopkins School of Medicine.

Underfunding and, therefore, a lack of treatments and cures for MND come at a high cost to American Taxpayers. In fact, billions are lost each year in tax dollars, revenue and otherwise earned wages to the US Economy, not including, what most think of, that being, the cost of care for the afflicted to the US economy. 

Motor neuron diseases (MND) are a group of progressive neurological disorders that destroy brain cells which control essential muscle activity such as; speaking, walking, breathing, and swallowing, according to the National Institute of Neurological Disorders and Stroke (US). 

“The disease really is characterized by, and for the most part, normal mental function, normal sensation,” explains Dr. Nicholas Maragakis,” M.D. of Johns Hopkins. “Patients gradually get weaker, over time. Unlike stroke, it’s not a disease that happens overnight.”

Between 80-95 percent of people living with MND experience some loss of speech and swallowing before they die. “You could go home pretty overwhelmed by the gravity of it, that every patient you see is dying, realizing it’s a tough road for those patients,” says Dr. Maragakis. As a result, all MND patients prematurely lose their ability to work and contribute, consequently the US loses approximately $10 billion each year, every year. 

Why Every American Should Care about MND:

  • Most are diagnosed at their peak earning & tax-paying years-$1B+ in lost income taxes annually
  • $5B plus in wages lost annually (100,000 Americans diagnosed per year at a modest average $50,000 salary=$5B+ removed from the system not including cost of long-term care to society.)
  • Family caregivers reduce their own income, taxes, health compounding costs and risks to USA
  • There are approximately 140,000 new cases diagnosed worldwide each year. That’s essentially 3 passenger jets crashing and burning each day!
  • National security impacted by diminished family security due to the loss of jobs, businesses, income, housing, nutrition, healthcare, and hope, creating desperation and fueling the potential for desperate acts from those directly and indirectly impacted
  • Loss of those previously considered part of the nation’s strong workforce (The leading cause of long term disability is musculoskeletal and connective tissue disorders at 27.5 percent.) (Source: Council For Disability Awareness, Cornell University, 2014)

Jack’s Fight:
“Before my diagnosis, I would hear of people with MNDs and say, essentially, ‘Too bad, so sad.’” Jack Crowley contributed highly to the US economy for 30 years, as a global executive in the technology, banking and capital markets before receiving the devastating diagnosis of Primary Lateral Sclerosis (PLS).  After experiencing years of progressive deterioration of his balance, speech and swallowing, among other terrifying symptoms, he was formally diagnosed in May, 2015. Like ALS, PLS is a debilitating disease causing progressive loss of control of your legs, arms and throat. Although not directly fatal, the loss of balance and swallowing can and does often cause premature death. PLS takes 4 years to diagnose.

“What I didn’t realize,” Jack continues, “and I’m not sure Americans do, is that in the eyes of the government and the corporate world, it’s you, the ‘healthy; taxpayer, employee, consumer who becomes personally responsible for ‘making up’ the loss of my, and others with MND, monetary contribution of taxes, revenue and purchasing.  I paid over $100,000 in taxes, purchasing over $200,000 in goods and services, annually. Not including, jobs I directly and indirectly created, and their exponential contribution to society.  Business and government, still says ‘Too bad, so sad’, we expect Jack’s money from YOU now.”

In what Jack calls his “last campaign,” he is dedicating himself to lobbying on behalf of the millions impacted by MND, with little to no hope for near term treatment, let alone, a cure. He says, “Attention with real intention is needed.” He explains, “combine awareness, increase your own and collaborate with others to facilitate treatments and cures,” along with investment, ‘”MND are not incurable they are just underfunded. Shift a couple of percentage points of funding from that of taking life via militarization, to preserving quality of life via treatments and cures and see higher returns and dividends in National Security at home and abroad.” Lastly he attributes fighting for and achieving a cure to effective management. “Good intentions are slowed by challenging execution. Coaching and cajoling are necessary. Messaging, methods and manpower need consistent monitoring and mentoring. I am dedicating my remaining semi-productive time on earth to educating, enlightening and empowering people on this fiscally as well as physically important topic here in the States and abroad.” 

“Although classified as rare diseases, Motor Neuron Diseases, are in fact, quite common,” states Jack. “There are approximately 140,000 new cases diagnosed worldwide each year.  That’s essentially 3 passenger jets crashing and burning each day! We wouldn’t, we shouldn’t, allow this to happen, let alone continue!”

Motor Neuron Disease can affect any adult, at any age, most diagnosed with the disease are in their most productive wage and tax years, forty to sixty years old.  Two hundred seventy-four Americans diagnosed with MND daily is similar to 2 passenger jets crashing and burning on American soil every day of every year.  Or put another way one hundred thousand diagnosed each year is like removing cities with populations of one hundred thousand, such as; West Palm Beach FL, San Mateo CA, Albany NY, etc. from the US maps annually and forever.

Media Opportunities: Jack Crowley and Nicholas Maragakis, M.D., Professor of Neurology at Johns Hopkins School of Medicine are available for live interviews. Video b-roll and full pre-recorded on-camera interviews are also available.  Contact Julie Manley at Julie@ideaworkscreate.com and (646) 981-3342.

About Jack Crowley: Positively impacting the lives of individuals and the bottom lines of entities is and has been Jack’s focus. He has enjoyed global responsibility for more than 30 years at some of the world’s leading technology firms. In late 2013 he purchased a farm and ranch in Western North Carolina with a vision of assisting in filling the need for “resilient, affordable, nutritious food production and its distribution.” In May, 2015, Jack doctors diagnosed Jack with Primary Lateral Sclerosis (a form of ALS). In “His Last Campaign,” Jack is working to increase awareness, investment, and management of Motor Neuron Diseases and how they impact, not only the afflicted, but also the stability of the healthy businesses and governments. Look for his upcoming website www.jacksfight.com and “Attention with Intention” projects on TV and media outlets.

About Nicholas Maragakis MD: Director, Michael S. and Karen G. Ansari ALS Center for Cell Therapy and Regeneration Research, Co-Medical Director, The Johns Hopkins ALS Clinic, Professor of Neurology, Johns Hopkins

Dr. Maragakis treats patients with a variety of neuromuscular disorders. His clinical practice is particularly notable for its attention to patients with motor neuron diseases, such as Amyotrophic Lateral Sclerosis (ALS) and Primary Lateral Sclerosis (PLS). 

This expertise is coordinated with the ALS clinic at Johns Hopkins, a multidisciplinary clinic with expertise in treating ALS and PLS patients and providing support to their caregivers. As an extension of Dr. Maragakis clinic, he is an investigator in clinical trials for ALS patients.

Research, Co-Medical Director, The Johns Hopkins ALS Clinic, Professor of Neurology, Johns Hopkins

Dr. Maragakis treats patients with a variety of neuromuscular disorders. His clinical practice is particularly notable for its attention to patients with motor neuron diseases, such as Amyotrophic Lateral Sclerosis (ALS) and Primary Lateral Sclerosis (PLS). 

This expertise is coordinated with the ALS clinic at Johns Hopkins, a multidisciplinary clinic with expertise in treating ALS and PLS patients and providing support to their caregivers. As an extension of Dr. Maragakis clinic, he is an investigator in clinical trials for ALS patients.

 

 

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