Throwing cold water on the ALS Ice Water Challenge

  Pete Frates, a 29-year-old former Boston College baseball player who is confined to a wheelchair because amyotrophic lateral sclerosis (ALS), agreed in July to have himself doused with bucket of ice water to raise awareness of his affliction, which also known as Lou Gehrig’s disease.    The ALS  Ice Water Challenge has succeed beyond his wildest dreams attracting 15 million people including everyone from entertainer Justin Timberlake to New Jersey Gov. Chris Christie.   Therein lies the problem.

Though I feel for Frates, whose wife is expecting their first child, and anyone who has been touched by this awful and always-fatal disease, most Americans are never going to meet anyone like him.  According to the ALS Association,  there are at most 30,000 people in the U.S. with the neurodegenerative condition at any given time.      Compared with other diseases that’s pretty small potatoes.   For instance, there are roughly 14 million people with cancer, according to the American Cancer Society.   About 5.2 million people have Alzheimer’s disease and about 1 million have Parkinson’s Disease, including yours truly.

Though the media coverage of ALS Ice Water Challenge talks about the need to raise “awareness” about the disease,  I don’t understand why that’s necessary.    Unlike HIV or Ebola,  ALS isn’t communicable.    Though there is some evidence that ALS has a genetic basis, like Tay-Sachs or Sickle-Cell Anemia,  most cases are “sporadic”, meaning the patient has no family history of the disease.   It seems that the people who need to be aware of ALS are painfully “aware” of it.

Moreover, the $10 million or so that the ALS Society has reportedly raised from the Ice Water Challenge probably won’t make a damn bit of difference in the search for a cure since it costs billions for drug companies to bring new medications to the market.    By the way, the pharmaceutical companies aren’t hiding a cure for ALS or any other awful disease.   These companies are about maximizing profits and shareholder returns if they are publicly traded.   A new wonder drug for Hepatitis C called sofosbuvir costs $90,000 for a 12-week course of treatment.   Imagine what a pharmaceutical company would charge for an effective ALS treatment or — god willing a cure.   It would make sofosbuvir’s costs seem like chump change.

I don’t begrudge the ALS Society their 15 minutes of fame.  Barbara Newhouse,  the non-profit’s CEO, has vowed to invest the Ice Bucket Challenge money “In helping people with ALS and their families and caregivers in the battle against the disease, while resolutely pursuing all avenues to extend, improve and ultimately save lives.” I solute the creativity of ICE Bucket Challenge.   If people are touched by disease, they should donate to the ALS Society, which is rated highly by the watchdog group Charity Navigator.    The publicity surrounding it has received it certainly a godsend.  (Update) The ALS Society is in the black as of its most recent 990 filed today though it had operated in the red during the 2013 fiscal year.

Of course,  I am annoyed that the ALS Ice Bucket Challenge is diverting attention from Parkinson’s disease.  Some may say that people with Parkinson’s and other conditions need to create their own “challenge” to grab the public’s attention.  I understand that argument but it makes me feel kind of sad, as if it I have to make my suffering entertaining to grab the public’s attention.  Even so, that’s easier said than done.

Thanks to the 24-hour news cycle, the public is like kittens playing with a tinfoil ball when they are excited by a fad.  They quickly move onto to something else when they get bored by their toy.  Let’s see how donations to the ALS Society hold up in six months or a year.

(Post has been revised)


Forget “The Michael J. Fox Show”, Working With #Parkinson’s Isn’t Easy

Michael J. Fox’s now-canceled television show told the story of a television reporter with Parkinson’s disease who thanks to the marvels of medical science is able to resume work after a multi-year layoff.    Though the premise of “The Michael J. Fox Show” was certainly  heartwarming, it doesn’t represent the real-world experience of many people with the incurable neurological disorder.   I have Parkinson’s disease and thought the show was mediocre even tough I really wanted to like it. From CBS MoneyWatch:. “This was within a week of having my job review in which he told me how well I was doing my job and giving me a raise,” she wrote in an email. “This produced such sadness I just wanted to die. It took me well over a year to start feeling good about myself.”

Why TSLA’s cars are a better investment than the company’s stock

Shares of Tesla (TSLA), Elon Musk’s electric vehicle company, aren’t priced for perfection.  They are valued as if the sun, moon and stars were in perfect alignment.

As I noted in a post for InvestorPlace, Tesla faces huge challenges such as increasing battery production, broadening its product line an increased competition from conventional automakers.   From the story:

While Tesla certainly is innovative and its CEO, Elon Musk, is among the most colorful, many people seem to forget that TSLA hasn’t yet made money on an unadjusted basis and might not for some time. Tesla’s costs will skyrocket in the coming years as it faces increased competition from the mainstream auto industry.

Anyone who is tempted to buy TSLA and can afford it should buy one of the company’s vehicles.  By all accounts, they are among the most reliable ever built notwithstanding the reports of vehicle fires.    If that idea doesn’t work, try lying down until the urge to buy this highly risky stock goes away.

There are too many bosses at #PhiladelphiaInquirer

Let’s set aside the issue about whether Bill Marimow deserved to be fired as the editor of The Philadelphia Inquirer and discuss a more troubling question:  Who’s the boss?

Former New York Nets owner Lewis Katz. H. F. “Jerry” Lenfest,  South Jersey political boss George E. Norcross III; Krishna Singh, chief executive of the Holtec International Corp.; William Hankowsky, chief executive of Liberty Property Trust; and Joseph Buckelew, chairman of Conner Strong & Buckelew, joined forces last year to buy the Philadelphia Inquirer and the Daily News and website for $55 million.

What made them think they would be able to set aside their considerable egos and work together to run one of the largest U.S. newspaper, an industry which none of them had any experience?   I know they spoke of their desire to own the papers for the “benefit of the community”, but what does that mean?    It’s doubtful that they appreciated the depth of the paper’s problems.

Every business needs a boss.   In theory, the boss of Interstate General Media is supposed to be Publisher Robert Hall.    In reality, it remains unclear who is running the company. Norcross has installed his daughter Lexi as the head of and has decided to concern himself with such mundane details such as the brand of coffee employees drink in their break room.

About the only thing that the owners all agreed on was that they should hire Marimow, who had done two other tours with the Inquirer.  Former Inquirer columnist Gail Shister noted in Philadelphia Magazine that Marimiow isn’t universally beloved. “As a newsman, Marimow’s moral authority is beyond question,” she writes. “As a manager, the same cannot be said.”

Katz and Lenfest are suing their fellow owners over their decision to fire Marimow.   Given the level of animosity that is evident among the paper’s owners, I don’t see how they can continue to work together.   Winding down this partnership isn’t going to be easy or cheap.  This distraction is the last thing the paper needs.

Further complicating the situation is the long-time romance between Katz and Nancy Philips, a veteran Inquirer editor.  That explains why Marimow was blocking needed change at the paper, according to his critics.  Norcross  told the  New York Times, that Katz “wants to control the newsroom to satisfy his friends and punish his enemies.”  That’s a ludicrous idea.

First of all, herding cats is easier than getting a large group of journalists to agree on anything Katz and Philips  have made little effort to hide their relationship. Robert Hall,who has been associated with the paper for years, must have mentioned it at some point to the company’s owners. Continue reading “There are too many bosses at #PhiladelphiaInquirer”

Michael J. Fox, the #Parkinson’s cause and me

Michael J.  Fox, god bless him, should win a medal one day for all the good he’s done to advance the cause of Parkinson’s research.    As I wrote in The Fiscal Times, the community could not have asked for a better spokesman.

His “Q Score,” a measure of celebrity awareness and likeability, stands at 28 percent, nearly double the 16 percent average. A whopping 88 percent of adults aged 18 and older know who Fox is, more than double 31 percent average for other celebrities.

My one quibble with Fox is that “The Michael J. Fox Show” is  a mediocre effort.    As a Parkie — Parkinson’s sufferer — I wasn’t expecting every episode to be an infomercial about my disease.  What I was hoping for was some laughs, which have been lacking.  The first two episodes were disappointing.  I thought the third one was a little better.

Maybe the show will get better over time.  Maybe it won’t.

But the fact that millions of people are now aware of Parkinson’s that weren’t before is a good thing.

And if Michael J. Fox or any of his people happen to be reading this blog, I think I have got some ideas that can save your show.

Call me. 🙂

Wall Street ignores `crazy’ government #shutdown”, at least for now.

Whose running Congress these days? I bet Ozzy Osbourne is the conductor on this “crazy train.”
You see only crazy people and the House Republican leadership want to shut down the government.  As I noted in Investopedia, the shutdown fight could lead to a far more worrisome battle over the debt ceiling, which could lead to the government defaulting on its financial obligations for the first time in our country’s 237 year history.

From the story:

The government is expected to hit its borrowing limit, which it needs to fund its activities sometime in October. Though some people have tried to compare the U.S. with cash-strapped countries such as Greece, there is a critical condition. Greece needed several bailouts because it couldn’t afford to pay its bills. The U.S. can afford to pay its creditors but sometimes threatens not to, a situation that in 2011 cost the US its AAA bond rating

For now, the market is yawning at the impasse in Washington. Major stock indexes are trading up. Gold, though, is plunging which is strange since people usually buy the metal when people get scared about their economic futures.

People can’t relax because this could easily be the calm before the storm.

Why has #MoePrigoff’s Disappeared From #StorageWars: Texas?’

First he was there and no he’s gone.

Moe Prigoff, perhaps the only reason to watch “Storage Wars:Texas”,  has disappeared.   At least, he is nowhere to be found on the small screen.

Storage Auction Forum recently noticed that Prigoff and Victor Rjesnjansky were missing from a recent cast picture. Rjesnjansky apparently is set to appear in an upcoming episode. As for Prigoff, his fate remains unclear.

His “partner” Mary Padian has teamed up with Jenny Grumbles.   Whether this duo will be dynamic remains to be seen.

Prigoff, I guess, is supposed to be the show’s answer to Barry Weiss,  “The Collector” on the original “Storage Wars.”  He is certainly one strange dude.  How else can you describe a podiatrist with hording problem?  And I am not sure what to make of this line from his official biography: “With the help of his young manager Robert, Moe runs two successful businesses.”

A&E has been screwing around with “Storage Wars.” The father and daughter auctioneer team Johan Graham and her father Earl Graham suddenly appeared on the show.   Dan and Laura Dotson, the show’s beloved husband-and-wife auctioneer team, were nowhere to be found.   “The Gambler”  Darrell Sheets and and his fellow tank top twin and son Brandon Sheets were also missing.

Maybe Prigoff isn’t missing.  He is probably hiding.

Has #BlackBerry found a white knight or a joker?

BlackBerry, which can’t give away its smartphones, got an unsolicited $4.7 billion takeover bid from its largest shareholder Fairfax Financial Holdings Ltd.

Or did it?

As I noted in my story in The Fiscal Times, there is less than this deal than meets the eye.  From the story:

Under the terms of the agreement, BlackBerry (NASDAQ: BBRY) will be allowed “to actively solicit, receive, evaluate and potentially enter into negotiations with parties that offer alternative proposals,” the company said in a statement. In other words, it can still go shop for a better offer until Nov. 4. If BlackBerry finds a better deal, it would have to pay Fairfax 30 cents a share, or more than $150 million. The termination fee would rise to 50 cents a share, or more than $260 million, if BlackBerry balks once a definitive agreement is signed.
About the only thing that BlackBerry has got going for it is its patents, which an analyst estimates could be worth about $1 billion.  The company would be wise to find a buyer.
Selling or licensing patents has been the go-to move for struggling technology companies for years. Eastman Kodak, whose film documented the 20th century before the company went into a long decline, struck a $525 million deal with a slew of technology companies such as Google and Apple in 2012. The sale was for a fraction of the $2.6 billion the company had hoped to get. Microsoft acquired AOL’s patents for $1 billion in 2012, which helped bolster the media company’s balance sheet. Nortel, which is currently mired in bankruptcy, unloaded its patents for $4.5 billion in 2011 to a consortium of companies led by Apple.

Ever wonder when #StorageWars jumped the shark?

“Storage Wars” is chock full of awesomely fake moments that it’s hard to choose just one.

My favorite, though, has to be Dave Hester’s Elvis newspaper find from 2011. The show said the stack of papers announcing the death of “The King” was worth $90,000. That’s a load of crap.

Newspapers aren’t scarce. Millions of copies of them are sold on a daily basis even in today’s Internet-dominated world. People hold onto papers when something especially newsworthy happens for years if not decades. Finding an Elvis newspaper isn’t hard, A quick check on eBay underscores this point.   None of the auctions, by the way, had any bids.

If you still want one of the actual Elvis newspapers found by Hester, check out Storage, which is giving them away.   The site was founded by “Storage Wars” auctioneers Dan and Laura Dotson. Supplies appear to be plentiful.

Interestingly,  the Elvis paper episode happened several years before Hester complained that he was fired for complaining the show was rigged.

Why are #Disney Theme Parks Making Life Tougher for the #Disabled?

I would to wring the neck of those “handicapped” assholes who hired themselves out as tour guides at Disney theme parks and used a special pass to enable their clients to avoid the park’s long lines because they ruined a system that benefited scores of people including me.  Many parents of children with autism will have to scratch Disneyland and Disney World off the lists of things their kids can do.

As I wrote in MSN Money:

When my family and I went to Walt Disney World earlier this summer, I got a Guest Accommodations Card (GAC) because of my Parkinson’s disease…I probably won’t get this help on my next visit to the “Happiest Place on Earth” — whenever that may be —  because people were abusing the system.

According, to MiceAge, a website that tracks Disney, the company is discontinuing the GAC as of Oct. 9 at Disneyland and Disneyland California Adventure and replacing it with what the company calls the Disabled Assistance System (DAS). Though the MiceAge story doesn’t mention Disney World, it seems likely that the policy will apply there as well.

Unlike the GAC, which can be used throughout the park, only one ride at a time can be reserved using the DAS. Disney may be solving one problem but creating many others.

There has to be a better way to ensure that jackasses don’t take advantage of the system. Disney, for instance could require people provide a doctor’s note to get a GAC. I was stunned that I wasn’t required to prove that I needed assistance;