Tag Archives: ALS

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.)

Walk With Gigi For ALS Awareness

For over 30 years, Gigi of Westport was a well-known, beloved local institution.

Raised in Egypt, England and Switzerland, with an MBA from the London School of Economics, Gigi Sakr and her skincare and medical aesthetics business helped countless Westport women look better.

But she also helped raise the confidence of unemployed women desperate for work, and the self-esteem of acne-scarred teenagers. She had plenty of high-end clients, and volunteered her services for plenty more who could not pay.

Gigi Sakr and her daughter, Gizelle Begler.

Gigi Sakr and her daughter, Gizelle Begler.

Gigi was also one of the first female coaches with the Westport Soccer Association. In  her spare time, she walked — a bandanna wrapped around her spiky blonde hair — anywhere near the water.

Five months ago, she closed Gigi of Westport. She’d been hospitalized with blood clots in her lungs, and an inflammation of her heart. At the same time, she was diagnosed with ALS — commonly called Lou Gehrig’s Disease.

“I always felt like a 30-year-old,” Gigi says. “Now I feel like I’m 90.”

She cannot walk or use her hands. Breathing is difficult.

“You see yourself dying a slow death,” Gigi adds. “Nothing can be done. There’s no treatment.”

She spends her days taking care of herself. And doing what she can to help others.

On Saturday, October 15 (10 a.m., Sherwood Island State Park), the ALS Association will sponsor a walk. The goal is twofold: to raise funds for, and awareness of, the disease.

Gigi Sakr in her native Egypt, a year ago.

Gigi Sakr in her native Egypt, a year ago.

Despite the famous ice bucket challenge, too many people know too little about it.

She is organizing a group — “Team Gigi” — for the ALS Walk. Family members (including her daughter Gizelle Begler, who closed her very successful couture business to take care of Gigi), friends and former customers have all signed on.

Gigi will be at the walk. And not just to cheer everyone on.

She’ll participate too — in a wheelchair.

“I’m gonna do it!” she promises.

Her voice and body are weak. But her spirit is very, very strong.

(To sign up for Team Gigi — or make a contribution — click here.)

Remembering Jim Conant

Midway through 6th grade, a new kid suddenly entered Burr Farms Elementary School. Our friend groups were well established, but everyone liked Jim Conant. He was funny. He was smart as hell. And — this is not something one generally says about almost-teenage boys — he was kind.

As we moved through Long Lots Junior High and Staples, Jim and I remained friends. Not best friends — we hung out in different circles — but we shared classes, senses of humor, and ways of seeing the world.

Jim Conant

Jim Conant

Jim always seemed to know who he was. I had no clue whatsoever. I admired his calm sense of self, even if I couldn’t describe it at the time.

Jim went to Princeton, and made a name for himself academically (graduating magna cum laude) and musically (he was a fantastic trumpet player). I went to Brown, still trying to figure things out. We shared a good-natured rivalry.

Jim then earned a master’s in electrical engineering from UCLA. He went on to work with radar, sonar and software. He held two patents.

I went on to do whatever it is I do. We lost touch, though he lived just an hour away in Brookfield.

Three years ago, at a Staples reunion, we reconnected. I told him how much I’d admired him when we were younger. He seemed surprised.

At the Staples reunion 3 years ago, I had a great time with old friends. From left: myself, Jim Conant, Steve McCoy and Fred Cantor.

At a Staples reunion 3 years ago, I had a great time with old friends. From left: myself, Jim Conant, Steve McCoy and Fred Cantor.

A few months later we met for dinner in Ridgefield. We caught up on our lives. He told me about his marriage and divorce, his 3 kids, his involvement in youth sports and a youth math program, and his civic volunteer work.

But Jim seemed distracted. A couple of months later, he called to say why. The afternoon of our dinner, he’d been diagnosed with ALS.

He relayed the news matter-of-factly. With his scientific mind, he’d already done plenty of research. Lou Gehrig’s disease sufferers generally live 2 to 5 years, he said. Before dying, they lose the ability to move their limbs, talk, swallow, and breathe on their own.

Their minds, however, remain fine. They know exactly what is happening to them.

At that point, he was in good physical shape. He kept active. His spirits were strong.

A couple of summers ago, Jim invited a group of old friends to his house on Lake Lillinonah. The setting was beautiful; the evening was fun. He was an animated tour guide as he piloted his boat across the water.

Jim at the helm of his boat on Lake Lillinonah. (Photo/Fred Cantor)

Jim at the helm of his boat on Lake Lillinonah. (Photo/Fred Cantor)

Our next dinner was at Rizzuto’s. He wanted to come to Westport. He didn’t get out much, but he could still drive. He apologized for having to prop his head up from time to time. His muscles were already weakening. But he talked about today and tomorrow much more than yesterday.

As with all ALS sufferers, his decline was steady. His preferred method of communication became email. A few months ago, he wrote that he had always wanted enough time to read and listen to music. Now he had that time, but for the absolute worst reason.

This summer, Jim emailed me that at some point — not then; in the future — he would have to make a decision about living life as a quadriplegic, or not. He described that choice matter-of-factly. Right now, he said, he was doing fine.

Jim Conant, his son Dan, and an unidentified family member at Jim's Brookfield home.

Jim Conant, his son Dan and sister-in-law Joanne at Jim’s Brookfield home.

On Friday, I emailed Jim:

I hope things are going okay, and you’re able to enjoy your surroundings. Your comment about having time you always dreamed of to read and listen to music – but not the way you wanted to – really resonated with me. It made a profound impact. So please know that – long after our elementary school days – you continue to influence my life, in very positive ways. For that, I am very grateful.

I am thinking of you.

Coincidentally, early on Monday, I saw on Facebook that Jim’s birthday had been Saturday. I had no idea.

Two days late, I posted a generic greeting on his timeline. Dozens of others were already there.

Jim never saw those good wishes, from his many friends. He did not get my email, either.

On Monday afternoon, his brother Scott sent the news.

Jim died Friday night, at home. His sister, son and a good friend were there.

One day before his birthday.

(A reception for Jim Conant will be held tomorrow — Friday, September 19 — at 10 a.m., followed by a memorial service at 12 p.m., at the Brookfield Congregational Church. He requested that in lieu of flowers, donations be made to the Massachusetts General Hospital ALS research clinic, the ALS Association, ASTDI or Regional Hospice and Home Care of Western Connecticut.)