Rock stars, celebrity chefs, and rare disease advocates band together to FIGHT MSA, a rare and fatal neurodegenerative disorder. The Multiple System Atrophy Coalition and other MSA groups will be in attendance in a show of solidarity in support of “rock ‘n roll chef” Kerry Simon.
A masterful list of superstars comes together for a spectacular fundraiser on February 27, 2014 to support multiple system atrophy (MSA) awareness. MSA is a rare and fatal neurodegenerative disorder affecting as many as 50,000 Americans. The evening event features world-renowned chefs preparing a rock ‘n roll dine-around that reflects the spirit of Chef Kerry Simon and his passion for food, music and imagination. While the culinary team provides the bites, Kerry’s musician friends will band together onstage for the performance of a lifetime as guests rock, chow and mingle for a great cause.
Partnering with Keep Memory Alive, the charitable arm of the Cleveland Clinic Lou Ruvo Center for Brain Health, Kerry and his supporters have put together an amazing night of electrifying music and gastronomic greatness to raise money for this important, and often ignored, cause.
Simon Says Fight MSA!
Chef Simon is such a positive ambassador for multiple system atrophy and the thousands of people currently dealing with its progression.
The dine-around and rock ‘n roll performances are unlike any other, and will feature chefs including Daniel Boulud, Kim Canteenwalla, Wylie DuFresne, Grant Macpherson, Michael Mina, Rick Moonen, Justin Nilson, Charlie Palmer, Megan Romano, Mark Tarbell and Jean-Georges Vongerichten. Rockers Alice Cooper, Slash, Sammy Hagar and Vince Neil join house band Sin City Sinners to entertain as supporters dine and imbibe. Special guest Lisa Loeb will also perform during the party.
Representatives from the multiple system atrophy community will also be in attendance at the event and at a special luncheon on Friday February 28. The invitation only luncheon is a brainstorming session to discuss and identify key opportunities in the fight against multiple system atrophy. The luncheon will be cohosted by Chef Kerry Simon, Elizabeth Blau, and The Multiple System atrophy Coalition. “The opportunity to sit down and talk with a wide group of colleagues about the struggles of fighting a little-known disorder and to identify opportunities and synergies for making meaningful progress is very exciting,” stated Don Crouse, a Board member of The MSA Coalition. “Chef Simon is such a positive ambassador for multiple system atrophy and the thousands of people currently dealing with its progression. We are so grateful for his openness in this fight and his efforts to bring awareness and raise funds. This luncheon offers a unique opportunity to develop a unified path forward as we all fight to defeat MSA.”
Thursday, Feb. 27
Keep Memory Alive Event Center
Tickets are on sale now at http://www.keepmemoryalive.org.
$1,000 Rock ‘n Roll Star – includes VIP pre-party reception with celebrity meet and greet (6 p.m.), access to the Rock ‘n Roll Cocktail Party, an autographed poster and entry into the VIP after-party at Simon Restaurant | Lounge at Palms Place featuring chefs Roy Choi, Barry Dakake, Richard Tapia, Mark Purdy and Tammy Alana. Special guest Chris Clouse, who has performed over the years at Kerry’s many restaurants, will also perform during the after party.
There are a limited amount $500 Rock ‘n Roll Roadie tickets available which include general admission into the Rock ‘n Roll Cocktail Party (7 p.m.).
Keep Memory Alive is designated as a 501(c)(3). Donating parties’ contributions may be eligible for tax deductions.
Other performers and chefs will be added to the lineup and announced as confirmed. Please check the Kerry Simon Says Fight MSA event Facebook page for updates.
ABOUT THE “SIMON SAYS FIGHT MSA” MOVEMENT
In December 2013, rock ‘n roll chef Kerry Simon bravely went public to let the community know that he is battling multiple system atrophy (MSA), an incurable and rapidly progressive neurodegenerative, and ultimately fatal, disease that affects multiple parts of the body, causing slowness of movement, muscle rigidity and poor balance. Kerry’s newfound mission in life is to improve the level of knowledge of MSA, speak up to increase global awareness of the disease and to create a network for those affected by MSA and their families. March is MSA Awareness month, help spread the word! Simon Says Fight MSA! #FMSA
About The Multiple System Atrophy Coalition®
The Multiple System Atrophy Coalition is a positive beacon of hope standing up to a little known, rare, insidious disorder. Made up of dedicated volunteers, The MSA Coalition has a primary purpose of encouraging and funding research to find a cure. The Coalition also provides much needed patient and caregiver support, educational resources, and advocacy to create awareness and to fight for issues important to the MSA community. At present, as much as 75% of all donations go directly into a dedicated Multiple System Atrophy Research Fund which now supports a research grant program. The MSA Coalition also has a world-class scientific advisory board (SAB) to review and award research grants to the most promising MSA research proposals. For more information or to donate to The Multiple System Atrophy Coalition, please visit: http://www.Multiple-System-Atrophy.org.
ABOUT CLEVELAND CLINIC LOU RUVO CENTER FOR BRAIN HEALTH
Cleveland Clinic Lou Ruvo Center for Brain Health provides state-of-the-art care for cognitive disorders and for the family members of those who suffer from them. The physicians and staff at the Center for Brain Health continuously work towards the development of early diagnosis and the advancement of knowledge concerning mild cognitive disorders, which could one day delay or prevent their onset. Patients receive expert diagnosis and treatment at the Center for Brain Health, which offers a multidisciplinary patient-focused approach to diagnosis and treatment, promoting collaboration across all care providers, offering patients a complete continuum of care and infusing education and research into all that it does. The facility, designed by Frank Gehry, houses clinical space, a diagnostic center, neuroimaging rooms, physician offices, laboratories devoted to clinical research and the Keep Memory Alive Event Center. For more information, visit http://www.clevelandclinic.org/brainhealth.
ABOUT KEEP MEMORY ALIVE
Keep Memory Alive, whose mission is to provide enhanced treatment and ultimately cures for patients and their families suffering from neurocognitive disorders, raises awareness and funds in support of the Cleveland Clinic Lou Ruvo Center for Brain Health. By supporting Keep Memory Alive and its fight against neurodegenerative diseases such as Alzheimer’s, Huntington’s, Parkinson’s, ALS and memory disorders of all kinds, we can ensure progress towards better treatments and ultimately cures will occur in Las Vegas. For additional information call (702) 263-9797 or visit http://www.keepmemoryalive.org.
My husband was diagnosed this September. He is currently taking physical therapy. Speech therapy and occupational therapy. He has msa type c. Has anyone had difficulty with their insurance regarding payment for these services.? We have united health care. He just went on Medicare on December 1st
My husband was diagnosed with MSA-C in December, 2014 and died in September, 2018. During the course of his disease progression, we had regular physical therapy and speech therapy services starting in 2016, and had occupational therapy for the last six months of his life. He was on standard Medicare with a supplemental plan through Anthem Blue Cross/Blue Shield. All those services were covered by Medicare, and what they didn’t pay, the supplemental policy did, so we had no out-of-pocket costs.
I would also recommend this webinar to gain understanding of what Medicare will cover and how to advocate with your providers to ensure you receive the services to which you are entitled:https://register.gotowebinar.com/register/1112473063481980418
I would like to find out about any support groups for MSA. I live in Regina, Sk. So far I don’t know of anybody else who has been diagnosed with this disease. Also I am wondering whether or not levodopa carbidopa is useful in helping the symptoms.
Where is the rockathon being held..? Is it in Cinncinati at the end of February?
Hi Gloria – Please visit our multiple system atrophy resource link:https://www.multiplesystematrophy.org/msa-resources/ Here you will find information on local support groups. Also, please ccll our support hotline at (866) 737-5999 to speak with somebody about your specific questions.