The Joyce D. and Andrew J. Mandell Center for Comprehensive Multiple Sclerosis (MS) Care and Neuroscience Research
Trailblazer (noun) One that blazes a trail to guide others
For many years, trial and error was the name of the game in the treatment of multiple sclerosis (MS). But over the last two decades, a great deal of progress has been made in understanding MS and treating the many challenges associated with this disease. And it was those daily challenges that led to the creation of The Joyce D. and Andrew J. Mandell Center for Comprehensive Multiple Sclerosis Care and Neuroscience Research at Mount Sinai Rehabilitation Hospital in Hartford. In its first 10 years, the MS center has become a global leader in MS care, developing a comprehensive approach with state-of-the-art treatments, ground-breaking research and innovative rehabilitation programs.
The Mandell Center had a serendipitous, yet deeply personal start. Founded in 2008 as a collaborative effort between the Connecticut Chapter of the National MS Society, the Mount Sinai Rehabilitation Hospital, and Joyce and Andy Mandell, its seed was inconspicuously planted in 2000, when Andy Mandell was diagnosed with MS.
For patients with MS, the immune system attacks the myelin, a fatty white substance surrounding many nerve fibers. Essential for the proper functioning of the nervous system, damages to the myelin disrupt the speed at which electrical impulses are conducted from the brain to the rest of the body, causing debilitating symptoms that can include paralysis, vision loss and speech difficulties. There is no known cure for MS, and existing treatments focus on the management of symptoms.
With Andy’s ability to walk severely compromised, the prognosis was discouraging. “There really wasn’t much treatment on the market,” he explains, “and doctors kept telling me the condition was likely to progress and would eventually get worse.” Andy’s wife Joyce adds, “All of the information was really negative. The doctors said ‘live with it, walk as much as you can, we’ll see you next year when you can’t.’”
After visiting several specialists around the country and always getting the same grim prognosis, good friend Lisa Gerrol, president of the Connecticut chapter of the National MS Society, told the Mandells about research being conducted by neurologist Dr. Albert Lo and Jennifer Ruiz at Yale. The two were interested in Andy’s case. Soon Dr. Lo started working with Andy and introduced him to a robotic treadmill.
Less than two years later, Andy had regained his gait pattern. As the future started to look a little brighter, the Mandells were determined to do everything in their power to help other people living with MS avoid the turmoil they had to go through after Andy’s diagnosis.
It was over breakfast in 2007 that The Mandells, Gerrol, Dr. Lo, Dr. Ed Johnson, the president of Mount Sinai Rehabilitation Hospital at the time, and Dr. Robert Krug, the hospital’s current president, put the plans together for the center. As many have said, the stars were aligned that day and with the generosity of the Mandell family, history was made.
A Model for Care
The comprehensive MS center bearing the Mandell name celebrated its 10-year anniversary in February.
“The Mandells’ vision of a comprehensive, all-inclusive and integrated approach to MS care is a reality,” says Dr. Krug, who oversees the center as Mount Sinai’s president and medical director for physical medicine and rehabilitation and vice president of rehab services for Trinity Health Of New England.
“We serve the multiple and complex needs of patients with cutting-edge equipment and therapies and specialists in the areas of neurology, physiatry, neuropsychology, urology, pharmacology, counseling, social services/case management, nursing, integrative medicine and physical, occupational and speech therapy.”
“There are significant moving parts here that allow a center of this size to operate efficiently,” said the center’s manager, Matthew Farr. “Our model is not readily available. People have sought us out for expertise and input into care.”
But that doesn’t mean that the staff at the Mandell MS Center will ever rest on its laurels.
Dr. Peter Wade, medical director for neurology, says the facility continues to seek out and add treatments, equipment and services to benefit patients. “Most recently we added acupuncture, which can help with pain,” he said. “It’s community acupuncture, so [the specialist] treats five or six people at the same time,” giving patients the added value of built-in support and camaraderie.
In 2011, five-thousand square feet was added to the center to accommodate more offices, treatment rooms, more infusion space, a neurorehabilitation gym and a “cool pool” for patients.
Dr. Lo, who moved his research with Ruiz from Yale to the MS Center and is the center’s director of neuroscience research, notes that the center is not only a leader in clinical care, but in research concerning the results of the disease as well. “Research being conducted right on-site; research that is being published and we’ve hosted two international symposiums with speakers from around the world. Those are great accomplishments and we’ll gain more momentum as we go.”
A Better Prognosis
Plans are in the works for the opening of two new centers, duplicates of the Mandell MS Center in Hartford. One, in Waterbury, which will be embedded in Saint Mary’s Hospital, is slated to open this spring. The other, at Mercy Hospital in Springfield, Mass., is still in the planning stages.
“The centers will work together and help one another,” said Dr. Krug. There will be regional opportunities to collaborate, with neurologists working together on cases.
“MS is no longer the diagnosis it once was,” says Dr. Wade, and the center is buoyed by progress. “There is a sense of optimism — there are so many options, treatments are so effective, decreasing the chance of the next attack, quieting down inflammation — it’s a better prognosis.”
