Clinical trials at Hadassah hospital for new ALS treatment ‘very encouraging’


A new treatment tested at Hadassah Medical Center in Jerusalem and developed by an American-Israeli biotech company appears to significantly slow the progression of ALS, also known as Lou Gehrig’s disease.

According to the findings of initial clinical trials published Tuesday in the medical journal JAMA Neurology, the treatment, which uses a stem cell infusion protocol, is safe and offers “possible clinical benefits, to be confirmed in upcoming trials.”

Hadassah: The Women’s Zionist Organization, which owns Hadassah Medical Center, said in a news release issued the same day that the clinical trials began in 2011 and use an “innovative” treatment for amyotrophic lateral sclerosis in which stem cells are harvested from the patient’s bone marrow before being injected into the cerebrospinal fluid. Twenty-six ALS patients participated in the trials of a treatment developed by BrainStorm Cell Therapeutics.

The study’s principal investigator, Dr. Dimitrios Karussis of Hadassah Medical Center, described the results as “very encouraging.”

“Close to 90 percent of patients who were injected intrathecally through the spinal cord fluid were regarded as responders to the treatment either in terms of their respiratory function or their motor disability,” he said in a statement. “Almost all of the patients injected in this way showed less progression and some even improved in their respiratory functions or their motor functions.”

A Phase 2, double blind study is running currently at the Mayo Clinic, Massachusetts General Hospital and University of Massachusetts Memorial Medical Center using a treatment protocol identical to the Hadassah trial.

“While this is absolutely by no means a cure, it is the first step in a long process in that direction,” Karussis said. “I see this treatment as being potentially one of the major future tools to treat degenerative diseases of the brain and spinal cord, in general.”

Hadassah President Ellen Hershkin said in a statement that the hospital “is eager to continue its groundbreaking work to combat ALS and similar neurodegenerative or neuroinflammatory diseases, such as multiple sclerosis and many others.”

According to the ALS Association, the disease affects 30,000 people in the United States and 450,000 worldwide.

How this rabbi with ALS uses his disease as a ‘mission to uplift’


Yitzi Hurwitz has plenty of reasons not to have a sense of humor. 

There’s nothing funny about a young, energetic husband, father of seven and rabbi being struck with amyotrophic lateral sclerosis (ALS), the crippling and often fatal neurodegenerative disease best known for afflicting baseball great Lou Gehrig and renowned physicist Stephen Hawking, and which has, so far, outmaneuvered scientists searching for a cure. 

So it was surprising, funny and heartwarming when the automated voice of Hurwitz’s Tobii eye-tracking software spoke up, saying, “It could only be Jared,” as soon as this reporter walked into his bedroom for an interview.

Hurwitz, 43, a native Brooklynite, and his wife, Dina, used to serve as the Chabad shluchim (emissaries) in Temecula. They had a small but dedicated congregation, with Hurwitz serving as chazzan and regularly playing guitar at shul get-togethers; he also wrote music in addition to his full-time duties of raising money, growing and supporting his congregation, and raising a family.

But in 2013, everything changed. Not knowing why he was experiencing some unusual and alarming symptoms, such as slurred speech, he sought medical assistance. When doctors eventually diagnosed his ALS, he and Dina knew that would make running their Chabad impossible.

In order to get the best possible medical care, the family left their post in Temecula in summer 2013 and moved to an apartment near Hancock Park in Los Angeles, where he lives now and can receive full-time care while surrounded by a large Jewish community. While he could still make trips to Temecula, though, Hurwitz was able to acquire one last big item for his congregation, raising $45,000 for a scribe to write a Torah for the Chabad of Temecula — its first.

“He said, ‘I know I’m in trouble, and I know it’s going to get bad, but I always wanted to write a sefer Torah for the people of Temecula,’ ” said Shmuel Fogelman, a friend who helps administer the ” target=”_blank”>hurwitzfamilyfund.com

The Ice Bucket Challenge: Where metrics meet meaning


A philanthropic campaign designed to combat an aggressive and debilitating disease has gone viral on the Web. 

In little more than a month, the Ice Bucket Challenge has inspired a spectrum of regular folks and celebrities — including politicians, athletes and movie stars — to dump a bucket of ice on their heads or donate to a cause. That cause is amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, and eventually leads to total paralysis and death. ALS affects nearly 30,000 Americans, according to the ALS Association, and the only hope for those afflicted is to fund research for a cure.

Enter the ice bucket and its frosty dare: Participants record themselves dumping a bucket of ice water over their heads, post the video to Facebook, Twitter, YouTube or Instagram, and then challenge someone else to do the same within 24 hours or donate $100 to ALS. Fortunately, many do both.

[Related: Jewish Journal’s Ice Bucket Challenge]

The proof is in the numbers, and these numbers are astounding: The ALS Association announced on Aug. 25 that it took in $79.7 million from July 29 to Aug. 25, compared with $1.9 million during roughly the same period last year (just a week earlier, they’d reached $22.9 million; by the following Friday, that figure rose to $53.3 million; and by the end of the weekend, nearly $80 million). More than 1.7 million of the contributors are “new donors,” many of them likely inspired to give out of gelid giddiness — or the joy of being in the company of a star-studded cast of participants, including Bill Gates, Oprah Winfrey, George W. Bush and Sergey Brin, all of whom have screeched and shivered on camera. 

“I am ready for the ice now,” Winfrey declared with quivering defiance, just before friend Gayle King dumped a bucket of ice over her ebony tresses. Winfrey shrieked and panted in her video posted to Instagram and challenged “The Hundred-Foot Journey” actors Helen Mirren and Dayal Manish, along with Steven Spielberg, Winfrey’s co-producer on the film, to do the same.

Spielberg, of course, was adorably game as two assistants sluiced ice water over his head. “Ohhhh MAN, That’s COOOLD!” he shouted. Next, he challenged J.J. Abrams, George Lucas and Jeffrey Katzenberg; Katzenberg even donned a tux for the trick, explaining, “When Steven Spielberg invites you to something, you dress for the occasion.” 

Abrams, creator of TV shows “Lost” and “Alias,” revealed in his Facebook post that his grandfather suffered from ALS, announcing that he would both dump and donate in his honor. 

Others used the forum in clever and crafty ways: Instead of ice, Hollywood bad-boy Charlie Sheen dumped $10,000 in cash on his head, challenging his former cast mates on “Two and a Half Men,” the CBS show from which he was booted, along with show creator Chuck Lorre, to match his donation. Revenge is a dish best served cold.

But statement-making aside, what accounts for so many leaders joining a frenzied public trend? And how did ALS’ incidental #IceBucketChallenge metastasize from kitschy caper into fundraising phenomenon? 

Part of the reason has to be that it’s so darned fun. Who doesn’t want to see Spielberg cry out from cold shock? Or watch Jimmy Fallon coordinate a group donate-and-dump on live network television? More than merely “follow” your favorite star by stalking their thoughts, you can actually follow in their altruistic footsteps. In a highly networked world, the Ice Bucket Challenge collapsed boundaries between watching and participating; between citizen and celebrity; between triviality and charity.

Who knew philanthropy could be entertaining, engaging and enabling all at once? 

The trend’s other strength is in its challenge. Most human beings have a competitive streak and want to prove that they’re game for a little test. This one was attainably simple: Give or do. Or do both. And it’s democratic: Everyone is eligible, proving you don’t have to be rich to participate in philanthropy — you simply need a smartphone.  

And yet, some have found the gimmick oppressive, publicly compelling people to give to this worthy cause, while ignoring so many others. And with so much emphasis on the slapstick silliness of it all, one wonders whether the deeper message about the urgency of the disease is being obscured. How many participants in the Ice Bucket Challenge know enough to explain what ALS is? So far, there’s no metric for that.

Still, there’s no denying that the brilliance of combining the social media ecosystem with the impetus for a cause has worked wonders for ALS, which now has significant new money to direct toward medical research that matters. Life expectancy for someone with ALS is, on average, just two to five years from the time of diagnosis. Its cause is unclear, and there is currently no cure, although one FDA-approved drug, riluzole, can slow its progress. 

In a sad and ironic twist, 27-year-old Corey Griffin, who helped spawn the Ice Bucket movement after watching his friend Peter Frates struggle with the disease, died in a tragic diving accident on Aug. 16. Life can be as fickle as an affected cell. And with death so unpredictable, it’s no wonder so many are (literally) streaming toward life.

‘Rubble bucket challenge’ is latest online salvo in Gaza conflict


It’s been going on for weeks. Relentlessly. With each new salvo, we wonder: will it never end?

It is the #ALSIceBucketChallenge, a viral social media trend that’s inspired celebrities, politicians and thousands of everyday citizens to make videos of themselves dumping buckets of ice water over their heads, ostensibly to raise awareness for amyotrophic lateral sclerosis, a neurodegenerative disease colloquially known as Lou Gehrig’s disease.

But as the summer wears on, the Ice Bucket Challenge has led many to create spinoffs of the meme — including the IDF, and now, Gazans.

The latest Israeli-Palestinian conflict has played out over social media since the start, with the IDF tweeting regularly and Hamas utilizing a number of accounts after repeated suspensions by Twitter.

So it seems only natural that each side should take up a bucket challenge, and its hashtag, to “raise awareness” for their cause.

While Israeli soldiers smeared their faces with hummus, Gazans have, not surprisingly given the devastation surrounding them, taken a darker approach: the #rubblebucketchallenge, created by Palestinian student Maysam Yusef and publicized by journalist Ayman Aloul.

In Aloul’s video, which has been viewed over 20,000 times on YouTube, the journalist stands amid the wreckage of several buildings and has a bucket of dust and gravel dumped over his head.

Alluding to severe water shortages in Gaza,  Aloul announces that “the use of water is too important to empty over our heads.” At the video’s end, once covered in rubble and dust, he says, “We do not have water, but this is what we have.”

The #rubblebucketchallenge (also known as the #Dustbucketchallenge or #remainsbucketchallenge) has attracted thousands of Facebook likes and inspired challenge videos from Mumbai, Germany, the United Kingdom and elsewhere.

 

 

 

Jews take up the Ice Bucket Challenge – and some choose hummus


Over the past month, a viral sensation has flooded the Internet: the ALS ice bucket challenge,  in which people post on social media videos of themselves dumping buckets of ice water over their heads to raise awareness for Amyotrophic lateral sclerosis, the neurodegenerative disease colloquially known as Lou Gehrig’s disease.

The challenge — which requires anyone who undertakes it to nominate someone else — was inspired by a 29-year-old former athlete Peter Frates, who suffers from ALS. It has spread from his Boston peers to police chiefs, celebrities, and pop stars, helping the ALS Foundation raise millions of dollars. Not bad for what’s essentially a giant digital game of freeze tag.

Jewish celebrities — from Adam Levine to Mark Zuckerberg — have enthusiastically taken up the cause. (Appropriately enough, given that her name means “water” in Hebrew, actress Mayim Bialik also took up the challenge.  )

But the phenomenon moved into the political arena last weekend when Justin Bieber nominated President Obama to douse himself in ice.

Even without a personal invitation from the Bieb, pols in Israel have begun taking up the challenge. Two members of Knesset have videoed themselves speaking about ALS awareness, then succumbing to buckets of ice — probably just about tolerable in August in Israel.

Yesh Atid Knesset member Dov Lipman, in a full suit, announces in both Hebrew and English that he’s “bringing the challenge to the Knesset,” and challenges three other MKs to take part as well.

(At least one other MK, Eitan Cabel, has taken up the cause ).

Not to be outdone, the famously media-savvy Israel Defense Forces has tried to redirect some of the viral attention to its own cause — the ongoing battle with Hamas that has so far claimed thousands of lives.

26-year-old IDF soldier Corey Feldman and two peers decided to eschew ice entirely and create the “Hamas vs. Hummus” challenge. (In Israel, after all, the iconic chickpea spread is more plentiful than water.)

In a video, three IDF soldiers in full uniform smear their faces with hummus, nominating others (and offering the option of donating to charity Friends of the IDF instead, in case nominees are hummus-averse).

“Hamas is bad, hummus is good,” says one soldier astutely, his cheeks lathered beige.

It’s doubtful whether the Hummus Challenge will achieve quite the viral status that the Ice Bucket Challenge has. All controversy aside, one can only surmise that many IDF supporters would cringe at this scandalous waste of hummus – which obviously should be smeared on pita, not faces.