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On a personal note: Celebrity chef joins MSA cause

This is not related to health IT, so if that’s all you’re looking for, I won’t be offended if you skip this post—unless you’re involved in wearable sensors, in which case, there’s something near the end that may be of interest.

No, this post is about multiple system atrophy, the rare, progressive, always-fatal neurodegenerative disorder that killed my father in 2012. While my dad was fighting this evil disease, more than a few physicians he saw had either never heard of MSA or had never seen a case of it. One marked it down in the medical record as “MS,” as in multiple sclerosis, a completely different condition.

Recently, MSA awareness got a shot in the arm in the form of some bittersweet news: Las Vegas-based celebrity chef Kerry Simon, who has been called the “rock n’ roll chef” by Rolling Stone magazine and probably is best known nationally for beating Cat Cora on “Iron Chef America” in 2005, told the world he had this illness. He went public in December in an interview with his friend Robin Leach — yes, that Robin Leach.

Rather than go into seclusion as his body starts to wither away, Simon has chosen to become the public face of the disease. He just started a new organization called Fight MSA, and has a high-profile fundraisers planned Thursday in Las Vegas. Simon is friends with a lot of rock stars, and these are big-dollar events with big names, including entertainment from Sammy Hagar, Slash, Alice Cooper and Vince Neil of Motley Crue, and food by a long roster of famous chefs from around the country. If you can make it, tickets are still available.

The same night, his restaurant in his home town of Chicago, Chuck’s: A Kerry Simon Kitchen, is holding a smaller benefit. It just so happens that I’m returning from the HIMSS conference in Orlando, Fla., that evening, flying into Midway Airport. Chuck’s is at 224 N. Michigan Ave., in the Hard Rock Hotel, which is right on the way home for me from Midway. If all goes well, I plan on being there around 8 pm, and I invite you to join me. Unlike the $500/$1,000 Vegas event, the Chicago fundraiser will only set you back the cost of a hamburger or a cocktail.

(If you happen to find yourself at one of Simon’s restaurants in Las Vegas, Chicago, Los Angeles, Atlantic City, N.J., or Punta Cana, Dominican Republic, please put in a good word about his fight against MSA.)

I’ve been trying to sell this story to national and local mainstream and foodie media, so far, to no avail, so I’m posting it here. If you have any leads for me, please let me know.

Also on the MSA front, perhaps the foremost researcher of this disease in the world, Dr. Gregor Wenning of the Medical University of Innbruck, Austria, last year published the first medical textbook dedicated to understanding MSA. Wenning just flew 18 hours each way to meet with Simon. If you’re a neurologist or other physician treating MSA patients, you can buy a copy here.

Just last week, the U.S. Food and Drug Administration approved a drug called Northera (droxidopa) for treatment of neurogenic orthostatic hypotension (NOH), a sudden drop in blood pressure when standing up that occasionally is a symptom of MSA, Parkinson’s disease, pure autonomic failure and even diabetic neuropathy. My dad had at least a couple of fainting spells due to NOH.

This summer, I am planning a huge undertaking to raise awareness this summer, a bike tour from Chicago to Washington, D.C. My dad lived in the area, and there just happens to be an MSA-related conference there in July that I may use as my finish line. That’s 800 miles, for those of you keeping score at home, and I think I can do it in less than two weeks. There may be an opportunity to ride a segment or two with me as well, particularly the final leg through Maryland. I expect to have some details to announce during March, which happens to be MSA Awareness Month.

I will be putting up a separate blog soon to share details of my tour and, hopefully, updates en route. (You know, quantified self folks, I might be able to make use of some of your technology if I’m going to be on a bike for 6-8 hours a day for 10-14 days. Just saying.)

For more information about the disease and the research underway, I’ll refer you to the Multiple System Atrophy Coalition in the U.S. and Canada, and the Multiple System Atrophy Trust in the U.K. There are support groups in other countries, and I’m happy to help you track them down if you ask.

February 21, 2014 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

Breaking: ONC releases proposed 2015 EHR certification criteria

If you want something buried, release it late on a Friday so it doesn’t hit people’s desks until Monday morning. If you really want something buried in health IT, put it out there late on the Friday before the annual HIMSS conference because nobody will get any real work done for another week.

I’m not sure if ONC is trying to hide anything, or just wanted to get this done before all its top people head to Orlando, Fla., for HIMSS14, but this afternoon, the office issued proposed criteria for the 2015 edition of EHR certification. This is the first time certification criteria haven’t accompanied Meaningful Use standards, which means ONC wants to tighten certification requirements in the midst of Meaningful Use Stage 2, rather than waiting for Stage 3, which won’t start before 2017.

However, the plan is to make the proposed 2015 standards voluntary; vendors would be just fine with 2014 certification and providers would not have to upgrade their systems to achieve or maintain Stage 2 Meaningful Use, according to ONC.

ONC says the proposal will officially appear in the Federal Register on Wednesday, triggering a 60-day comment period that will run through April 28. Expect a final rule this summer.

UPDATE, 5:11 pm CST:  It appears that they’re just happy to have it done and to be able to talk it up. In fact, ONC’s Steven Posnack seems downright giddy.

 

Also, self-described HIT standards geek Keith Boone is reading through the whole thing and posting real-time updates on his observations.


 

I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.