Tag Archives: ALS

Remembering Jonathan Greenfield

Jonathan Greenfield — a photojournalist, film director, tea importer, athlete, world traveler, environmentalist and devoted husband and father, whose battle with ALS helped and inspired countless people here and around the world — died peacefully yesterday at his Westport home, surrounded by family and close friends. He was 50 years old.

Jonathan was born in Philadelphia. After dropping out of New York University, he spent his early career as a photojournalist, traveling the globe in search of compelling stories. His work was published in The New York Times.

He received his masters at the elite Kunsthochschule fuer Medien in Koeln, Germany. He produced and directed documentaries and short fiction films for German networks on subjects like drug addiction, the homeless, and German Jews serving in the Israeli Defense Forces.

Jonathan Greenfield

On a trip to New York in 2007 he met Iris. A whirlwind romance led to a marriage and the birth of 3 children. The family made a gradual migration out of New York, eventually settling in Westport.

Always searching for the next adventure, Jonathan embarked on a new career as a purveyor of imported teas. Wanderlust and an endless sense of wonder characterized his life. His athletic pursuits included surfing, swimming, hiking and cycling.

Taking his children to music and swim lessons, skateboarding with them, and bringing them on adventures brought him endless joy.

He was adamant about supporting environmental causes and plant-based diets. In recent years he discovered a new challenge in the Wim Hof breathing method. Through breathing, cold therapy and commitment, he trained himself to control his body for optimal focus and health. He sat in a bath of freezing water for up to 2 minutes, emerging invigorated. Jonathan also completed his first triathlon.

In late 2018, he received a diagnosis of ALS (Lou Gehrig’s disease). While he could still walk with assistance, Jonathan trekked through the Pyrenees Mountains with Wim Hof.

That same year he and Iris founded Breathe 4 ALS, a non-profit that funds ALS research and workshops, to help patients breathe stronger and longer.

Jonathan and Iris Greenfield.

Jonathan was preceded in death by his father Hyman and brother Seth. He is survived by his wife Iris; children Zach, Skye and Josie; sister Ashley; niece Sydney, and nephews Dylan and Hunter.

Greenfield’s family is grateful to the Westport and Cherry Hill communities for their outpouring of support and endless love; to Zenia Gordon for her loving care, and Chris Curtin of Compassionate Care ALS for his unwavering support and advocacy during Jonathan’s final days.

A graveside service will be held tomorrow (Tuesday, June 15, 10 a.m., Willowbrook Cemetery, Westport). In lieu of memorial donations, the family requests that donations be made to The Greenfields’ foundation, www.breathe4als.org.

Arrangements are under the direction of Sholom Chapel, Stamford.  To send condolences to the family, please visit www.sholomchapel.com.

To read more about Jonathan Greenfield’s tea business, click here. For a story on Jonathan and the Wim Hof breathing method, click here. For a story on Jonathan’s fight to access ALS medications, click here.)

Roundup: ALS, Wine Corks …

 

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MoCA Westport is very punny. The art space on Newtown Turnpike says:

“Bark your calendar to join other canines and their companions to sniff and schmooze at MoCA Westport’s New Yappy Hour! Our new community event will take place on the 1st Thursday of every month, from June – September.

“Haute hounds can lap up libations, thanks to water in their favorite flavor – bacon, chicken, beef or vegan – while human guests relax with a glass of Mutt Lynch Unleashed Chardonnay, Merlot Over and Play Dead, Chateau d’Og Cabernet Sauvignon or a refreshing cocktail featuring tequila, vodka, or gin. Beer selections are also available for purchase.”

MoCA members (and dogs) receive their first drink free — and other benefits.

Admission is free and open to the public. No reservation required. For more information, click here.

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Last September, “06880” reported on Jon Maddock’s battle with Lou Gehrig’s Disease.

May is ALS Awareness Month. His sister Judy reports that nearly 3 years after his diagnosis, the 1973 Staples High School graduate is participating in a platform drug trial at Massachusetts General Hospital.

“Jon remains positive, knowing eventually drugs will slow ALS down to manageable, and someday a cure,” Judy says. “He is trying to be around when that happens. He and his family expect to be a part of that future. He’s doing his part to help find a cure.”

You can help too. Just click here to donate.

Jon Maddock in 2019. September 2019. The armband covered a PICC line used for infusions.

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Isabelle Breen writes:

“My friend Katie Augustyn told me pre-COVID that she collects corks to recycle in Stamford. I started to collect them to add my stash to hers, then thought nothing more about it.

“With all the wine consumption in Westport, there are surely lots of corks. I wonder how to put out the word that Westport would benefit from having its own collection partners. Maybe a liquor store wants to take this project on?

“There is a shipping cost to the partner, but perhaps they could collect a nominal fee ($1) with each bag dropped off to defray their cost.

“Westport’s composting program has taken off remarkably well. This could be  another successful step toward helping our environment.”

Any takers? If you’re interested in this idea, click “Comments” below.

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Today’s “Westport … Naturally” photo #1 : an Earthplace duck….

(Photo/Abby Gordon-Tolan)

… and #2: 5-day-old robin fledglings:

(Photo/Betty Auber)

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And finally … Mary Wells was born today in 1943. She died in 1992, at 49, of cancer. Her longtime friend and former collaborator, Smokey Robinson, delivered a eulogy.

Jonathan Greenfield: ALS Warrior Needs Help

Jonathan Greenfield is a well-known Westporter, and great friend of “06880.” 

Jonathan Greenfield

He’s been an NYU dropout, photojournalist, documentary filmmaker, surfer, triathlete and tea specialist.

Three years ago we featured his amazing life in this story: “The Most Interesting Man in Westport Drinks Tea.”

A year and a half later — shortly after completing his 3rd triathlon — we reported on him again. He’d been diagnosed with cancer — and ALS.

With his trademark optimism, good humor and vigor, he took a leadership role in a crusade to help others with ALS. He organized fundraisers, and as a proponent of the Wim Hof breathing technique, he spread the word about innovative treatments.

Another story, last May, described his advocacy work for ALS research and treatment.

Jonathan Greenfield at a Washington, DC protest.

Here’s our latest update. It comes courtesy of WestportMoms, the multi-media platform. “06880” is honored to repost this. We hope you’ll share it too, with all your networks.

Iris and Jonathan Greenfield are going through an unimaginable situation.

In 2018 Jonathan was diagnosed with ALS. Over the past year his diagnosis took a turn for the worse. He is now confined to a wheelchair, without the ability to speak, write or perform basic motor functions.

Iris works her day job as an acupuncturist (a field significantly impacted by COVID), and spends her nights waking regularly to care for Jonathan. That’s in addition to raising their 3 amazing children: Zach (12), Skye (10) and Josie (8).

Jonathan and Iris Greenfield.

The Greenfields’ health insurance does not pay for the constant home care that Jonathan requires. That has created an incredible financial strain on the family.

As a community, we are defined by how we come together to help our neighbors in the greatest hour of need. Jonathan and his family desperately need our help, so they can pay for their basic living expenses.

Please click here to contribute to their GoFundMe page. The page contains more information about Jonathan’s life, as well as links to his Breathe4ALS organization, and a book of his photojournalism compiled by friends.
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MLB’s Lou Gehrig Day: The Local Connection

June 4 marks the 80th anniversary of the death of Lou Gehrig. The legendary New York Yankees’ 1st baseman — “The Iron Horse” — died 17 days before his 38th birthday, of amyotrophic lateral sclerosis. The disease now bears his name.

This June 2, all 30 Major League Baseball teams will inaugurate an annual tribute to Gehrig, and recognize the fatal illness. All players and managers will wear a patch with his #4. “4-ALS” logos will be displayed around stadiums.

MLB will use the occasion to raise money and awareness to battle the disease, and pay homage to advocacy groups like the LG4Day committee.

That group was responsible for the league-wide initiative. Co-chair of the committee was Chuck Haberstroh, the former Staples High School basketball star whose mother Patty is afflicted with ALS.

Well-known to Westporters through many activities, including her work with the Department of Human Services, Patty was diagnosed in 2017. She has inspired her family — and many others throughout town — since then.

Haberstroh, songwriter Bryan Wayne Galentine — who was also diagnosed with ALS in 2017 — and Adam Wilson spent 2 years persuading MLB to honor Gehrig with a day, as it does Black pioneer Jackie Robinson and Puerto Rican humanitarian Roberto Clemente.

Hall of Fame statues (from left): Lou Gehrig, Jackie Robinson, Roberto Clemente.

Various teams held their own ALS Awareness Days, but Haberstroh and his group wanted more. They had to convince all 30 clubs to sign on. The breakthrough came in October, when the presidents of the Arizona Diamondbacks, Boston Red Sox and Minnesota Twins agreed to email the presidents of nearly 2 dozen teams that had not yet pledged support.

Within minutes, it was done. Sadly, Galentine died 2 days later.

Patty Haberstroh

That galvanized Haberstroh to work even harder to raise ALS awareness — along with funds to find cures and treatments. The family has already raised hundreds of thousands of dollars through the #ALSPepperChallenge.

“Lou Gehrig Day will increase awareness of ALS year after year,” Haberstroh says.

“And it will give hope to those with little today — somethin Mom has always cared about as a social worker in town.

“Someone diagnosed today receives the same prognosis — 100% fatal — as Lou got over 80 years ago. That’s unacceptable.”

Word has just gotten out about the June 2 4-ALS Day. The nation will hear more about it in the months ahead.

For Chuck Haberstroh and his family, that makes every team a winner.

Click below for an ESPN SportsCenter highlight, featuring brothers Chuck and Steve Haberstroh:

Jon Maddock: All In Against ALS

Jon Maddock’s Westport roots run deep.

His father Larry was a well-known local mason — as were Jon’s grandfather and great-grandfather. Jon idolized his father, and worked summers for him through high school (Staples Class of 1973) and college (University of Maine 1977).

Jon Maddock, in 9th grade at Long Lots Junior High.

But Jon did not go into the family business. He built his first engine-powered model plane in 4th grade, learning from mechanical drawings. He followed a variety of career paths — including 5 years as a stockbroker — before realizing that design suited him best. His current position is senior designer at Laars Heating Systems Company in New Hampshire.

Jon was also passionate about physical activity and challenges. He bicycled from California to Connecticut (taking an indirect route of more than 5,000 miles), skied alpine and cross, sailed and raced beach catamarans (and was commodore of the Sandy Hook Catamaran Club/Hobie Fleet 250), mountain biked, ran long distances, skated (inline and figure), and enjoyed trout and fly fishing.

He played trombone (and was a member of the Fred Robinson Big Band), and built furniture (as well as, of course, stone walls). Jon has always been active and stayed fit. If he did something, he was all in.

Jon Maddock, in action.

But in July of 2019 he was diagnosed with ALS.

His life changed profoundly. A year later he struggles to talk. He walks slowly, with a cane.

His prognosis is like all ALS sufferers. He will slowly become paralyzed, and eventually be unable to breathe. The average life expectancy is 2 to 5 years. Though 10% of those stricken with ALS live for 10 years, there is no known cure.

The Ice Bucket Challenge has brought money to the cause, and research has escalated. But Jon — and so many others, including Westporters — are in a race against time.

Jon contacted “06880” because — throughout his life — the town has inspired him. Now he wants to share information about a new medication. So far, Jon says, tests show that AMX0035 has significantly slowed the progress of ALS. (Click here for an NPR report.)

The ALS Association is seeking early approval from the Food and Drug Administration. Without it, more than 3 years could elapse before the medication is available. “That’s not long enough for many of us,” Jon says.

The ALS Association is presenting a petition, along with data, to assist in gaining early approval from the FDA. Jon hopes “06880” readers can help (click here).

Jon Maddock takes a break from work.

“Westport is a superb community — rich with the best schooling, the arts, and compassionate people,” Jon says.

“I have been gifted throughout life for having been exposed to the inspiration that Westport exudes.”

Now he asks Westporters to inspire the FDA to act soon. For Jon Maddock, it’s a matter of life or death.

Jonathan Greenfield: On The Front Lines Of ALS Fight

The coronavirus is grabbing all the headlines. But May is ALS Awareness Month. The other day, Jonathan Greenfield — a Westporter who is battling the disease — traveled to Washington, DC. His wife Iris and children went too. 

They participated in a protest. The goal was for the FDA to fast-track a treatment for ALS as quickly as they are gearing up for COVID-19. Jonathan reports:

There are treatments for ALS that we need now. One is Nurown, involving stem cells. Nurown has been in the pipeline for 10 years, and is currently in phase 3 of a trial.

If I can go to my neurologist, have stem cells extracted from my blood and injected into my muscles and private parts for $600 a shot, why can’t I have Nurown — which is basically stem cells harvested from bone marrow — put through a process and then injected into my spinal column?

Jonathan Greenfield at the Washington, DC protest.

It’s absurd that the FDA refuses to open pathways for us. Many other countries already have programs similar to Nurown. ALS patients spend lots of money to be treated there.

The idea that we’re the greatest country in the world concerning health is laughable on many levels. But on the development of drugs we’re especially behind. That is because of the FDA.

My life, or any life with ALS, can’t wait. If the past 6 months are any indication, I will be similar to a quadriplegic in another 6. I recently accepted use of a power wheelchair, and my hands can barely type this email on my phone. My speech is seriously diminished. Last week a feeding tube was inserted into my stomach.

I’d much prefer to write about the free weekly Breathe Thru Zoom sessions my foundation Breathe 4 ALS. But I believe people need to be aware of this FDA situation.

The speed at which the FDA is moving towards a COVID vaccine is amazing. Why not for ALS, when proven and safe treatments already exist?

At the protest, I joined individuals who participated in the Nurown trial. Some  walked out of wheelchairs. Some got their voices back. Will this work for everyone? Probably not. But it appears to be a good weapon for the arsenal. It’s a treatment, not a cure.

A scene from this month’s ALS FDA proest in Washington.

If given to me today I might be able to preserve function, and last longer. Long enough for BIIB078 from Biogen, which targets the reason I have ALS: the familial gene C9orf72. My father passed from ALS in 2015. Currently my brother and I have it. My aunt is one of the oldest living asymptomatic carriers of the gene. Her son is also a carrier and currently asymptomatic.

BIIB078 is currently in cohort 4 of phase 2, a double blind study. I was unfortunately passed over for cohort 4. I believe they’re gunning to make the jump to phase 3, like they did with the sister drug for the ALS gene SOD1. So in short, I have to last longer.

There are other drugs in the pipeline. ALS will soon be treated like HIV. We’ll be on a cocktail of drugs. If ALS were contagious, we’d be there today. And with recent success reversing sickle cell through repairing genes, there is very good reason to believe a cure for my family is coming.

But will I see the day? If the FDA keeps ignoring ALS I will not. Sadly I won’t see my kids off to middle school, high school or college. Even now our usual surf trips to Rockaway have stopped. I’ve gone from the adventurous dad, to the dad who can barely engage.

But my kids have been amazing! I love their help, and hate it at the same time. It was chilly at the protest, and they voiced not one complaint. Not one despite the blocks we walked to get in front of the White House.

They still don’t really understand the rights our democracy affords them concerning protest and freedom of speech. Yet I believe this experience was imprinted in their DNA. They’ll be able to call back to it in years to come.

Meanwhile, if you’d like to help: Please call your senators and representatives!

Jonathan and Iris Greenfield with their children, in front of the White House.

Haberstrohs Help ALS Take Over Times Square

Two years ago, Patty Haberstroh was diagnosed with ALS.

She did not take the news lying down.

Neither did her family.

Together they embarked on the #ALSPepperChallenge. Across the country, people — from national celebrities like Shaquille O’Neal, Charles Barkley and Dan Le Batard to local ones like the Staples High School principal and first selectman — ate habaneros and jalapeños, raising nearly a million dollars to fight what is also called Lou Gehrig’s Disease.

In addition, 2 of Patty’s sons — Chuck and Steve — joined the IAmALS advisory board.

This morning, they rose early. With their friends — current and former Westporters Chris Aitkin, Matt Cook, Ben Erwin, Chris Kenyon, Steve O’Dell, Stacy Rosenthal and Raffi Tokatlian — they joined 150 others as IAmALS “took over” nearly a dozen billboards in Times Square.

Steve and Chuck Haberstroh, helping change the world for their mom.

Their messages brought attention to the fight — and spread the message that ALS research can also unlock critical breakthroughs for diseases like Alzheimer’s, Parkinson’s and multiple sclerosis.

Some of the messages were hopeful. Some were educational. Some were defiant.

All are crucial.

Bad weather kept Patty Haberstroh from attending the Times Square event this morning. Her husband — Parks & Recreation Commission chair Charlie Haberstroh — and daughter Kim watched the livestream at home. So did their son Tom, in Charlotte, North Carolina with his family.

Jonathan Greenfield Breathes For ALS

It’s been more than a year and a half since I profiled Jonathan Greenfield.

A lot has happened to the man I called The Most Interesting Person in Westport

A few months after that story, the NYU dropout/photojournalist/documentary filmmaker/surfer/triathlete/tea specialist was diagnosed with cancer.

And ALS.

He is battling both diseases with his trademark optimism, good humor and vigor.

Meanwhile, he continues to focus on others. He’s eagerly assumed a leadership role in a crusade to help everyone — those diagnosed with ALS, and all the rest — breathe better. We can enhance our lives — even live longer — Jonathan says, if we learn proper techniques, then take ice baths.

And — oh, yeah — Jonathan is organizing several events, to raise funds for two causes: breathing workshops, and ALS research.

Jonathan Greenfield and his wife, Iris Netzer-Greenfield.

Jonathan’s ALS diagnosis in December 2018 did not come out of the blue. His father had died not long before of what is also called Lou Gehrig’s Disease. Jonathan’s brother has it too.

Doctors said they caught it early. But the prognosis — muscle weakness, difficulty breathing, paralysis — is grim. Death, Jonathan says, eventually comes from asphyxiation.

He had already heard about the Wim Hof breathing technique. Combined with cold therapy, it’s said to affect the sympathetic nervous system, resulting in greater energy, reduced stress levels, and an augmented immune system.

When a Wim Hof video appeared on Jonathan’s YouTube feed, he took note. He was about to head to Boston to undergo radiation for the liposarcoma in his neck — a difficult procedure in which a mat would be molded to his face, shoulders and upper body. He would be fastened to a table, and lie perfectly still for 15 minutes.

Jonathan Greenfield, in his body mat.

The weekend before the treatment began, Jonathan took a Wim Hof class. He learned the breathing sequence — then took part in a guided ice bath in the snow. “I was on fire!” Jonathan marvels.

He used the breathing method to endure his first treatment. It did even more than he expected. After 2 rounds of breathing, he went into the deepest meditation state he’d ever experienced.

Over the next 5 weeks, Jonathan developed a routine. He awoke in his Cambridge hotel room. He breathed, went to the hospital for radiation, then returned to the hotel to swim, take a sauna and cold shower. Then he sat — in a towel, still wet — on his hotel deck in the freezing cold. For another 40 minutes, Jonathan would breathe and meditate. He felt great.

In the afternoon, he’d work.

Jonathan was excited. He traveled to Spain, for a Wim Hof workshop.

Working with Westporters Brooke Emery Sharfstein and Julie Blitzer, he booked Earthplace for a June breathing event. He brought 300 pounds of ice.

Jonathan Greenfield, deep in an ice bath.

That’s not all. Realizing that breathing could have helped his father’s quality of life in his final days, Jonathan vowed to share what he learned with the world.

He created Breathe4ALS. In August the organization earned 501c3 status. It’s totally volunteer-run. Sixty percent of funds raised go toward research; 30% to breathing sessions for patients, and 10% for website and operational expenses.

It’s pretty clear that neither ALS nor cancer have slowed Jonathan down. They have not dimmed his spirit either.

“Life is fine,” he says forcefully. “Yes, it’s more challenging in some ways. I’ve taken some wild spills, and thankfully haven’t broken anything yet. But this is what life is about: challenges. It’s how you meet them, harass them and overcome them. Otherwise, life is a bore.”

Not long after his diagnoses, Jonathan Greenfield hiked in Spain with Wim Hof (left).

Jonathan does not want anyone to feel sorry for him. Instead, he urges, “come breathe with me. Hike mountains with me. Celebrate all the possibilities with me.”

Jonathan is focusing on his life here, with his wife Iris — an acupuncturist, who practices in New York and Westport — and their 3 children, ages, 10, 8 and 6. His friends, he says, have “selflessly rallied around us.”

On  Thursday, October 17 (7 p.m., MoCA — formerly the Westport Arts Center — at 19 Newtown Turnpike), Breathe4ALS holds its first fundraiser. It features cocktails, bites and an exciting art raffle. Click here for tickets and more information.

Also ahead: A Breathe4ALS event at the Westport Woman’s Club on November 3. Attendees will learn about the Wim Hof Method (and can enjoy hundreds of pounds of ice).

It’s not limited to people with ALS, he emphasizes. “For anyone, this is a great tool for deep meditation and biofeedback.”

A similar Wim Hof session is set for Cherry Hill, New Jersey on January 12 (Katz JCC).

Meanwhile, Jonathan has a 19.8-cubic foot freezer in his garage. He’s adding a sauna. He hopes to invite neighbors, friends — and everyone else — over, to breathe and plunge.

Cool!

Jonathan Greenfield’s home ice bath. The temperature is 32.1 degrees.

Patty And Paul Ring The NASDAQ Bell

It’s been a year since Patty Haberstroh’s family started the Hot Pepper Challenge, to raise funds for ALS. Three months earlier, she’d been diagnosed with the neurodegenerative disease.

It’s been 3 years since the Frates family first did the Ice Bucket Challenge, for the same important cause.

This morning, Patty — the energetic, creative program specialist in Westport’s Human Services Department — her family, and the Frateses, were in New York. They rang the opening NASDAQ bell, in their continuing efforts to raise both funds and awareness of ALS.

They were joined by Westporter Paul LaHiff and his family. He too has ALS (also called Lou Gehrig’s Disease). Also on hand: ALS Foundation members, and representatives of the company that produces the Radicava drug.

Paul LaHiff (front, left) and Patty Haberstroh (front, right), with families and friends, this morning on the NASDAQ floor.

The ceremony was televised live on CNBC. And in case anyone missed Patty with her pepper shirt — well, look here:

Patty continues to advocate for ALS causes — and treatments. Yesterday, she was interviewed by WSHU. Click here for that inspiring story.

Haberstrohs’ Hot Pepper Challenge Picks Up Steam

Everyone in Westport knows Patty Haberstroh. The energetic, creative and deeply committed family programs specialist for the town’s Human Services Department ensures that our neediest neighbors get the resources they deserve — and that those of us with the ability to help get a chance to do so.

Patty Haberstroh

Patty’s husband Charlie is embedded in town too: He chairs the Parks and Recreation Commission. Patty’s sons starred on Staples High School sports teams, and retain strong ties to their hometown.

So when Patty was diagnosed 3 months ago with ALS, they did what the Haberstroh family always does: got together, and got to work.

The result is the #ALSPepperChallenge. It’s like the 2014 Ice Bucket Challenge — except much, much hotter.

The idea is to eat a hot pepper — habanero or jalapeno — on camera. You’re filmed making a pledge to  help find a cure. Then you nominate someone (or many others) to do the same.

A project like this needs a kick start. Patty’s son Tom — a longtime ESPN basketball writer — was just the man. His sports and media connections pushed the #ALSPepperChallenge into overdrive.

Since Christmas, Shaquille O’Neal and Charles Barkley have eaten peppers — and raised funds. So have Domonique Foxworth, Dan Le Batard and the Miami Heat.

Oh, yeah: The Staples boys basketball team is doing it too.

Media giants like USA Today and People magazine covered Patty’s #ALSPepperChallenge.

“I’d never eaten a habanero, and I never want to again. But I’ll eat it a thousand more times if it means my mother and others living with ALS can kick this horrible disease,” Tom told People.

“There is no effective treatment for ALS. There is no cure. Anything we can do to change that, we’re going to try.”

(If you’re wondering: Why hot peppers? There are few things that make you feel more alive than eating one.)

Patty has been buoyed by support from friends, her sons’ and daughter’s friends, and complete strangers.

The average life span after diagnosis is 3 to 5 years. “I’m fighting against time here,” Patty said.

“I pray that these hot pepper eaters are raising enough money to find a cure for me and others before it’s too late.”

Anyone who knows Patty Haberstroh — and in Westport, that’s all of us — knows she is not sitting back, feeling sorry for herself.

She told People: “The adage to live each day fully has never rung more true to me. I’m saying to people that I’m lucky in that you often wish in a memorial service that the person who has passed away could hear the wonderful things being said about them. I am reading and seeing those things said while I’m very much here!”

The accolades will continue.

As will the hot pepper-eating, video-making and fundraising — in Westport, and around the world.

(For more information — and the donation page — click here.)