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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.

Great news from Health eVillages

As a board member of Health eVillages, I’m proud to share this video from rural Lwala, Kenya, where clinicians and other health workers are harnessing the power of mobile technology to deliver better care and, for some people, the first real healthcare they have ever had. This video, from from when Health eVillages Co-Founder Donato Trumato and Program Manager Matt Linder trekked to Lwala in October, shows how mobile health is helping local women deliver healthy babies.

Subsequent to this trip, the Lwala Community Alliance highlighted the work of Health eVillages here. Then, at a Health eVillages board meeting in December, Trumato issued a challenge to raise $150,000 to construct a dedicated maternity ward at the hospital in Lwala by year’s end. Physicians Interactive, of which Trumato is CEO, pledged half that total, and then others far wealthier than I stepped up and helped Trumato met the goal by Dec. 26. Operating funds are still necessary, and Health eVillages (or “Heal the Villages,” as one partner has pointed out) wants to help more people, including some at a site in rural Louisiana.

Since 2012, Health eVillages has helped the Lwala Community Alliance cut early infant mortality in half (from 60 per 1,000 births to 31 per 1,000). However, the Lwala still area happens to have the highest HIV/AIDS rate in all of Kenya, so education, care and prevention are critical. Here’s an overview on the Health eVillages-Lwala Community Alliance partnership (.pdf). To donate, visit http://lwalacommunityalliance.org/donate/.

Thanks, and stay tuned for more updates.

January 26, 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.

Great news for Health eVillages

As a board member of Health eVillages, a program that provides mobile health tools to help extend the reach and knowledge of health workers in remote and underserved parts of the world, I am thrilled to hear that the organization has raised $58,000 this month.

Most of the money, $38,000, came from the first-ever “Apps Save Lives” golf tournament, held Aug. 16 at Royce Brook Golf Club in Hillsborough Township, N.J. The other $20,000 was in the form of a grant from the Vodafone Americas Foundation, announced Aug. 11.

From Physicians Interactive, which established and provides administrative support to Health eVillages:

Health eVillages Raises $58,000 for Global mHealth Program in August

Mission Benefits From First “Apps Save Lives” Golf Tournament, Vodafone Americas Foundation Grant

READING, MA–(Marketwired – Aug 27, 2013) – Health eVillages, which provides mobile health technology to rural healthcare providers around the globe, announced today that it raised $58,000 in August through its inaugural “Apps Save Lives” golf tournament in New Jersey and a grant from the Vodafone Americas Foundation.

The tournament, hosted by Physicians Interactive (PI), the leading provider of online and mobile clinical resources and solutions for healthcare professionals, and the Robert F. Kennedy Center for Justice & Human Rights, was held on August 16th at the Royce Brook Golf Club in Hillsborough Township, New Jersey. It drew representatives from fifteen different life science organizations, including eight major pharmaceutical companies, and raised $38,000.

The Vodafone Americas Foundation, which strives to improve lives through wireless and mobile technology, also announced a $20,000 grant on August 11th to benefit Health eVillages programs. The grant will be used to help further the Health eVillages mission to empower healthcare providers in the most challenging clinical environments anywhere in the world through mHealth technology that helps them to save lives.

“I want to thank all of the Apps Save Lives tournament sponsors and the Vodafone Americas Foundation for their tremendous support of Health eVillages,” said Donato Tramuto, Founder of Health eVillages and Chairman of the Board and CEO of Physicians Interactive. “There was an electrifying sense of energy throughout the day at the tournament as everyone united in support of our mission to use mobile apps to help save lives and advance care delivery in underserved regions around the world.”

Tramuto and Physicians Interactive founded Health eVillages in October 2011 in partnership with the Robert F. Kennedy Center for Justice & Human Rights to address the knowledge gap faced by healthcare providers around the world. Since then, Health eVillages has provided support to clinicians who have conducted more than 50,000 patient interactions in underserved areas.

Health eVillages provides iPods and iPads loaded with medical reference and clinical decision support apps through six pilot programs to medical professionals in Uganda, Kenya, China, Haiti, Dominican Republic, Pacific Island nations and rural Louisiana. Physicians Interactive supplies the medical content for the mobile devices through its Skyscape platform.

Anyone interested in contributing money or devices to Health eVillages can do so through its website. Corporate sponsorships of Health eVillages are also available. For more information about corporate sponsorships, contact Merrill Press at merrill.press@healthevillages.org.

Also, Health eVillages founder Donato Trumato is a finalist for the 2013 Modern Healthcare Community Leadership Award. I encourage you to vote for him here. Voting is open through Sept. 20.

 

August 29, 2013 I Written By

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

Things change pretty fast in health IT, don’t they?

Yes, things do change pretty fast in health IT. I realized this over the past couple of weeks when I updated my database of contacts by scanning and categorizing about 300 business cards I’ve collected over the past 2½ years. (I really let things pile up this time. Now that my desk is reasonably clean, I hope I never do that again. I can claim extraordinary circumstances in 2012, but that only accounts for one year.)

What really struck me, in addition to the amount of time I let this slide, is the number of new categories I had to create in the database and the number I had to modify. My contacts go back to when I started covering healthcare in October 2000, and I’ve had a card scanner for at least 10 years. I had “PDA” and “ASP” as two of the choices until I changed them to “smartphone” and “SaaS” within the last couple of years.

Here are a few terms that are new in my database since I last did a thorough update, probably early in 2011:

  • accountable care
  • analytics (as opposed to data mining)
  • business incubator
  • remote monitoring

I also can’t believe I didn’t have CIO as a category until this month.

Some of the changes reflect a shift in what I’ve covered, but some terms are pretty new. Did you know what accountable care was prior to 2010? Were there many business incubators or accelerators in healthcare before Rock Health started up in 2011? I don’t know of any.

By the same token, when was the last time anyone talked about a PDA, an ASP or RHIO? Perhaps it’s just been a change in semantics, but the real change has been in the technology and the focus of healthcare executives. (Come to think of it, some of the tags on this blog are a bit out of date. I’ve been blogging since 2004. You get the picture.)

On another note, thanks to Healthcare Scene guru John Lynn, who hosts this blog for me, for, without my prompting, promoting the fact that I’m cycling 100 miles in an event called the Wrigley Field Road Tour on Sunday, Aug. 25, for the third year in a row. The ride supports an organization called World Bicycle Relief, which provides specially made bikes to remote villages in Africa so people who are otherwise without transportation can get to school and jobs. It also benefits Chicago Cubs Charities, which funds a number of youth programs in the Chicago area. (The ride’s co-founders are World Bicycle Relief founder F.K. Day, whose family owns bike component maker Sram, and Todd Ricketts, whose family controls the Cubs.)

Within the last two weeks, I suddenly got a surge of donations from people within the health IT community, and I couldn’t figure out why. Now I know. If you’d like to help, here’s my fundraising page.

One unexpected donor was Todd Stein of healthcare PR firm Amendola Communications. I’d be remiss if I didn’t mention that he is fundraising to help offset medical expenses of a colleague whose 3-year-old son faces surgery for a brain tumor. From that page:

Kathy C., a friend and colleague (who has always been the first to help but the last to ask for help and so wants to remain anonymous) is a single mother of three children all under the age of 7. Her 3-year-old son “James” was recently diagnosed with a brain tumor.

The surgery will cost hundreds of thousands of dollars. Unfortunately, Kathy has a $10,000 deductible on her health insurance plan and stands to pay out of pocket costs that are estimated at three times that amount. James is going in for the first of a series of surgeries this week and paying tens of thousands of dollars in medical expenses is a hardship for anyone, especially a hard working single mother of three young children.

Please keep Kathy and James in your prayers and give whatever you can to support their urgent need. Just giving up a daily coffee for one week and giving that amount would make a world of difference.

And now, it’s just about 5 o’clock here in Chicago, so please enjoy your weekend.

 

 

August 16, 2013 I Written By

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

Attending Health 2.0? Donate your old smartphone

If you’re planning on attending the Health 2.0 conference in San Francisco next Monday and Tuesday, Health eVillages, a program of the RFK Center for Justice and Human Rights, will be collecting used Apple iOS and Android mobile devices. Health eVillages, of which I am a member of the advisory board, will refurbish your device and load it with medical reference materials, clinical decision support tools, drug dosage calculators and other mobile health tools and deploy it to a clinician working in a developing country, helping to bring higher-quality care to that community.

Current Health eVillages sites are in Haiti, China, Kenya, Uganda, with more to come.

If you have a used iPhone, iPod Touch, iPad, Android phone or and tablet (sorry, no BlackBerrys, which is what I happen to have), drop it off at the Health 2.0 registration desk or at the Physicians Interactive booth (No. 37) in the exhibit hall.

If you want to learn more about Health eVillages, founder Donato Trumato, CEO and vice chairman of Physicians Interactive, will be speaking for about 5 minutes on the main stage the morning of Tuesday, Oct. 9, and then will lead a lunchtime presentation at 12:50 p.m. PDT in the Imperial B ballroom at the Hilton San Francisco.

I will be there, too, participating the “3 CEOs” session Tuesday at 8:10 a.m. I will be interviewing Phytel CEO Steve Schelhammer live on stage. Am I nervous? Only about having to get up that early.

 

October 2, 2012 I Written By

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