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December 18, 2014

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What’s next for Kerry Simon in his battle against Multiple System Atrophy

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Denise Truscello / WireImage / DeniseTruscello.net

Kerry Simon and Bill Murray attend the Simon Says Fight MSA benefit at Keep Memory Alive event center Thursday, Feb. 27, 2014, in downtown Las Vegas.

Simon Says Fight MSA Benefit

Kerry Simon, second from left, and Bill Murray, right attend the Simon Says Fight MSA benefit at Keep Memory Alive event center Thursday, Feb. 27, 2014, in downtown Las Vegas. Launch slideshow »
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Sammy Hagar and Slash perform during the Kerry Simon Says Fight MSA benefit at Keep Memory Alive event center Thursday, Feb. 27, 2014, in downtown Las Vegas.

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Former Las Vegas Mayor Oscar Goodman, chef Grant Macpherson and Las Vegas Mayor Carolyn G. Goodman attend the Kerry Simon Says Fight MSA benefit at Keep Memory Alive event center Thursday, Feb. 27, 2014, in downtown Las Vegas.

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Josef Vann and Ilana Vann attend the Kerry Simon Says Fight MSA benefit at Keep Memory Alive event center Thursday, Feb. 27, 2014, in downtown Las Vegas.

“Iron Chef America” winner Kerry Simon is back at the Mayo Clinic in Rochester, Minn., today undergoing a third round of stem-cell clinical trials in an attempt to arrest the brain disease Multiple System Atrophy that he is fighting.

This series will be more prolonged than two previous treatments in January and February after harvesting cells in December. The spine injections are expected to last over the next two months.

It’s incredible to think that it has been only 10 weeks since Kerry revealed the debilitating disease to me, as our amazing hospitality and music communities have swung into action as volunteers to help Fight MSA.

Now with a staggering $540,000 raised at last week’s first charity benefit Simon Says Fight MSA, a Kerry Simon Comprehensive Clinic and a neuroimaging program will be established at our Cleveland Clinic Lou Ruvo Center for Brain Health.

The benefit at the Keep Memory Alive event center downtown brought together star chefs and headline rockers from across the country. They all paid their own way. Even the volunteer waiters and bartenders generously took their tip jars and donated more than $1,000 to Kerry’s cause.

Among the rock stars who traveled here: Alice Cooper, Sammy Hagar, Vince Neil, Slash, Matt Sorum, J.D. Fortune and Todd Rundgren, while Oscar-nominated actor and Kerry’s longtime friend Bill Murray served as show MC.

Guest chefs included Daniel Boulud and Jean-Georges Vongerichten from New York, Michael Mina from San Francisco, Charlie Palmer and our local culinary stars Rick Moonen, Megan Romano and the night’s organizer, Elizabeth Blau, and her chef husband Kim Canteenwalla.

I served as MC for the night and joined Christian Kohlberg for the auction, which raised $152,000. Artist Peter Max’s donation of an at-home portrait drew $50,000 and an at-home dinner with Picasso chef Julian Serrano another $40,000.

An after-party hosted by N9NE chef Barry Dakake with the Alize culinary star team was held at Simon in Palms Place, and celebrity guests supporting Kerry included Banacheck, Nathan Burton and Matteo, cast members of Criss Angel’s “Magic Jam” at Luxor. Luxor headliner comedian Carrot Top was another supporter.

Back in December after Kerry’s battle with the disease that has no known cure or treatment became known, Elizabeth joined with Larry and Camille Ruvo, George Maloof and me to organize a committee to fulfill Kerry’s wish to leave a legacy to help other MSA sufferers.

We met with medical experts, MSA patients and the board members of the current MSA Coalition. Dr. Jeffrey Cummings and Dr. Ryan Walsh from our Cleveland Clinic joined with Dr. Phillip Low and Dr. Wolfgang Singer from the Mayo Clinic.

“Very little is known about MSA. We don’t know how it starts, how it progresses or how to diagnose and treat it,” said Dr. Walsh. “However, it does have some similarities with other neurodegenerative diseases we are treating and researching.

“A greater understanding of MSA has the real possibility to translate into an acceleration of research and treatment of MSA and related diseases such as Parkinson’s and Alzheimer’s.”

Kerry told the group: “MSA sucks. It’s far more aggressive than Parkinson’s. Call it Parkinson’s on steroids. It’s more severe , more rapidly progressive and more limited in treatment.”

Many of the visiting MSA patents shocked us by saying how to this day many doctors still don’t even know MSA exists and often misdiagnose it. The atrophy of the body’s muscles leads to the lungs not functioning and patients suffocating to death.

The Kerry Simon Comprehensive Clinic will broaden patient services to include physical and brain therapy for walking coordination, slow movement, stiffening muscles, tremors and slurred speech pathology. Kerry’s clinic will assist with local providers for symptoms of swallowing difficulties, urinary complications and blood pressure.

Kerry hopes that it will result in identifying better treatments and connecting with other centers to conduct larger clinical trials to find a pharmaceutical cocktail, medicine and cure. MSA also can cause falling, fainting, double vision and general weakness throughout the body.

Treatment is aimed at controlling symptoms but is minimally effective. The most common cause of death within seven years of diagnosis is a failure of the respiratory system. Over the next few weeks, our committee will activate the next steps discussed with the group to continue the momentum that’s begun for Kerry’s fight against MSA.

Kerry, who owns six restaurants and was a lifelong runner, summed up: “Now I can’t walk, sleep or drive a car. MSA has completely changed my health, but it hasn’t changed my optimism. I haven’t given up in the kitchen, and I’m not giving up on life. I am dedicated to finding a cure. It begins with raising awareness and funds. The efforts have started here in Las Vegas, my culinary and medical home. Home is where the help is.

“The knowledge and accessibility of the medical team at the Cleveland Clinic Lou Ruvo Center for Brain Health is incredible. They’ve counseled me along the way as my condition has declined. Through physical therapy, they’ve literally forced me to keep moving. They’ve inspired hope.

“Despite the fatigue, I can’t weaken. You have to have faith. We need your help.”

To support Kerry’s fight against MSA, please contribute online at KeepMemoryAlive.org/KerrySimon.

Robin Leach has been a journalist for more than 50 years and has spent the past decade giving readers the inside scoop on Las Vegas, the world’s premier platinum playground.

Follow Robin Leach on Twitter at Twitter.com/Robin_Leach.

Follow Vegas DeLuxe on Twitter at Twitter.com/vegasdeluxe.

Follow Sun A&E Senior Editor Don Chareunsy on Twitter at Twitter.com/VDLXEditorDon.

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