The Haberstroh family has long set the gold standard for civic involvement in Westport.
Charlie and his wife Patty were involved in a long list of activities, from politics (Board of Finance, RTM, Board of Selectmen, Parks & Recreation Commission) and sports (you name it), to social welfare (Department of Human Services).
Their children continue the tradition, without missing a beat.
Patty Haberstroh
When Patty — a beloved and long-time Human Services family coordinator — was diagnosed with ALS, the Haberstrohs added their prodigious energy to education, advocacy and fundraising around the debilitating and deadly disease.
On June 17th, brothers Chuck and Steve — a former Staples High School All-State golfer — played 100 holes in Hartford, to raise funds to fight ALS.
No big deal? That was 100 holes in one day.
The group of 24 — including ESPN NFL analyst and Westport resident Dan Orlovsky — teed off at 5 a.m. They finished nearly 16 hours later, at 8:45 p.m.
Dan Orlovsky, midway through the long but rewarding day.
They did it all in pouring rain — all day long.
That was challenging, Chuck says. But, he notes, “it was nothing compared to what our mom dealt with battling ALS.”
The long, emotional day brought in over $450,000.
Funds go to 3 charities. ALS TDI is laser-focused on finding cures and treatment for the disease. Team Gleason is a leader in developing and sharing technology for people living with ALS.
Experience Camps — based here in Westport – is a national program offering year-round programs for children whose parents or caregivers have died.
Chuck and Steve Haberstroh, with a sign honoring their mother at Keney Park.
Rob Eichler — a 1971 Staples High School graduate, who was involved in Players, the music program and more — now lives in Peterborough, New Hampshire, with his wife Martha. His sister Lissie lives nearby; so does John Zurich, a longtime Westport friend.
Rob Eichler, in the Staples 1971 yearbook.
A year ago, Rob was diagnosed with ALS (Lou Gehrig’s Disease). It has progressed rapidly.
John suggested an article on ALS research. There’s a hook: a story Martha wrote about Rob’s dad, Jack Eichler — a longtime Westport resident.
Here it is. It shines an important light on the disease, and on its impact on several former Westporters.
Martha wrote:
Jack Eichler, Rob’s dad, was a quiet, kind, methodical man whose pocket protector and slide rule were ever-present in his shirt pocket.
He was an Eagle Scout as a teen, then later a Boy Scout leader and beekeeper.
Jack was also a pilot in World War II, carrying parachute troops, towing gliders, and transporting soldiers between the US, Central America and Africa, with 182 ocean crossings.
Later he flew recreationally with a flying club out of Bridgeport, and taught flying and instrument flight aviation.
He became a mechanical engineer, and invented a machine to insert fruit filling into strudel at Pepperidge Farm. Another invention was circular windshield wipers for airplanes.
Like Rob, Jack was a man of many talents. Until Rob was diagnosed with ALS, I had completely forgotten about another of Jack’s significant accomplishments.
One of Jack’s best friends, nuclear physicist Hugh Neale, suffered from ALS. Though Hugh became paralyzed, he could still use his eyes to communicate because eyes are not incapacitated by ALS.
With Hugh, Jack designed a device called the ETRAN Communicator: a rectangular plexiglass window, with a smaller rectangular hole cut out of the middle.
Clusters of letters and numbers were embedded at certain spots around the perimeter of the ETRAN window. Hugh could communicate by indicating certain letters or numbers with a glance of the eyes.
With Hugh on one side of the ETRAN and an observer on the other side, the observer could register which letters Hugh’s eyes selected, and string the letters together into words and sentences.
Using the ETRAN Communicator.
Jack donated the ETRAN Communicator to humanity. He never expected or received any remuneration.
Rob recalls Jack telling him that he called this device “ETRAN” because those ar 5 of the 8 most-used letters in the English language.
In 1982, the ETRAN Communicator was underwritten by the Fran and Warren Rupp Foundation for production and distribution. Jack and Warren Rupp were fraternity brothers at Case Institute of Technology (now Case Western Reserve University).
More than 1,000 requests for the device from all 50 states were fulfilled that year. Additional orders came from Australia, Canada, England, and non-English speaking countries.
One ETRAN board was issued to British mathematician and nuclear physicist Dr. Stephen Hawking.
A monumental shift for patients and their families occurred, enabling communication for formerly silent individuals.
Jack Eichler, with his invention.
This sea change was noted in an article published by the Dorr-Oliver Corporation, the company founded in Westport where Jack worked as a senior design engineer in the early 1980s.
It noted: “Even small children afflicted by cerebral palsy can use ETRAN II, with symbols instead of letters. Jack’s file is 5 to 6 inches thick, with letters of thanks from parents and relatives so grateful for the chance to communicate with paralyzed loved ones.”
Although more advanced, high-tech options are available now to help non-verbal individuals communicate, ETRAN is still used today.
During an appointment, Rob’s communications augmentation specialist pulled out an ETRAN to confirm its present use.
But at the time of Jack and Hugh’s collaboration, the ETRAN Communicator was a brand new and indispensable tool. It was a selfless and generous contribution to humanity, designed to improve the quality of life for those with ALS and other debilitating, speech-robbing diseases.
We have two ETRAN Communicators in our basement. One is the original prototype board that Jack created to communicate with Hugh Neale. The other was produced by the Fran and Warren Rupp Foundation for public use.
Perhaps one of these will come into use for Rob someday.
How strange a coincidence that Jack would invent a device for those suffering from ALS, never knowing that his son would someday be afflicted with this diagnosis.
But also, how poignant it is that Jack made such an effort to help a friend, and in so doing, improved the lives of countless others also suffering with severe physical limitations.
Clearly, the spirit of helping is a quality that Jack passed down to Rob.
Anyone who knows Rob knows he goes above and beyond to help others, always with kindness, concern and love for humanity. For both father and son, I am eternally grateful.
Westporters — and everyone else — can help raise funds for ALS research, in Rob’s name.
There is a walk October 5 in New Hampshire. Contributins are welcome, even if you can’t be there. Click here to donate.
Rob writes:
Amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s Disease) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe.
I was diagnosed with ALS in August of 2023.
Rob Eichler
But I first learned about it when I was 13. My dad had a colleague with the disease. I visited a few times with my dad. I was somewhat daunted by the hospital bed in the dining room, the immobile father surround by his wife and several sons around my age.
Years later a college professor of mine was afflicted, forcing his early retirement.
In 2012 a work colleague of mine had a brother with ALS. I volunteered to join an ALS 50-mile bike ride to raise money for research and direct patient care support.
I read somewhere that medical students, when they come across ALS, say, “boy, this is the one you don’t want.” I thought about ALS occasionally, and felt the same way.
Now that I have ALS, I’m discovering it is much more prevalent than I had thought: about one in 300 men, one in 450 women. Many people I meet acknowledge they had a parent, a cousin, an in-law who struggles with ALS or who has succumbed to it.
Now, in addition to raising funds for research, direct patient care support, and advocacy through the ALS Association, I am volunteering to participate in a clinical trial, and several studies to determine bio-markers for ALS.
Thank you for helping me reach my Walk to Defeat ALS fundraising goal. The Walk to Defeat ALS raises funds to support those affected by ALS and to spread awareness of the urgency to find treatments and a cure.
The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis. ALS can strike anyone, and presently there is no known cause or cure.
I’m walking to change the statistics. To bring help and hope to those living with the disease. To ensure that no one ever hears the words: “You Have ALS” again.
The past 2 years have brought incredible advancements in ALS research, expanded access to care for people living with ALS, and enabled legislation that impacts the quality of life of people with ALS and their families.
But we can’t stop now. The key to a cure begins with you.
Please consider walking with me or sponsoring me (click here). With your help, we will be able to make a difference in the lives of people affected by this disease.
If you needed any more proof that Westport is racing headlong into the holiday season: Tonight (Saturday) at 5 p.m., the William F. Cribari Bridge gets lit.
As always, Al’s Angels do the honors. Also as always, everyone is invited
Sure, it’s a few days early. But, Al DiGuido says, “we believe that our world needs a beacon of hope and love right now (as always). We are called to be a light in the world!”
Al’s Angels does so much for Westport — from providing the inspirational Saugatuck bridge lights, to giving holiday meals and gifts to children (and their families) battling cancer, rare blood diseases, natural disasters and severe financial hardship. Click here to give back to this great organization.
The Cribari Bridge over the river in Saugatuck will be lit at 5 p.m. tonight. (Photo/January Stewart)
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Westport’s $217 million budget pays for a lot — everything from Public Works trucks, to Band-Aids at the Aspetuck Health District.
But one big item is missing: the Volunteer Emergency Medical Service.
Astonishingly. from the ambulance that helps save your life, to the Band-Aids they offer, they raise all their own funds.
Now that you’ve picked yourself up off the floor (and hopefully, don’t need medical attention for it), read on.
Our wonderful WVEMS recently kicked off their annual fundraising drive with letters to everyone in town.
It might be easy to overlook it, in the rush of year-end pleas by many very worthy organizations (and, um, others).
Don’t.
The request comes with a new option: to donate on a recurring (weekly, monthly or yearly) basis. That’s the lifeblood (ho ho) of many groups.
Right now, they’re fund raising for a crucial need: 3 new ambulances. They have life cycles of their own, and (like many of us) they’re headed toward their expiration date.
Two of the 3 have been paid for, by very generous donors. Residents need to pitch in for the third — and for everything inside.
“Ever since October 7 — when I woke up to an email from a friend in Jerusalem saying “I am safe, but war has begun” — I have felt a sense of shock and sorrow as probably you have, too.
“This has been made worse by my astonishment that so many, while protesting for peace and justice for the innocent people of Gaza, did not first condemn the slaughter, rape, torture and kidnapping of innocent people on that day.
“I also want a safe, peaceful resolution for Gaza. But I do not want to live in a world where the slaughter of innocents for any cause is contextualized as reasonable, or even as ‘glorious.’
“I realized I could do something to help myself cope with the grief and to hopefully let art do the talking.”
Elaine made 4 “prayer drawing videos,” with 7 hostage children. One is below; click on, to view.
“My hope is to keep all our hearts open to our shared humanity, through the eyes of these children. B’ Shalom and with love,” she adds.
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“Below Surface” — the award-winning 19-minute documentary about the Westport Weston Family Y’s AquaFitness program — is going national.
Its TV debut is tomorrow (Sunday, November 19, 10 a.m., Lifetime Channel).
It’s inspiring, powerful — and filled with Westporters you’ll recognize.
Connecticut viewers got a sneak peek this week. AquaFit instructor (and star of the film) Patty Kondub, and producer (and AquaFitter) Mary Lake Polan were interviewed on NBC’s CTLive.
Everyone into the pool. And then out, to watch tomorrow!
“A Father’s Promise” is a powerful story about the aftermath of Sandy Hook, and the mission to end gun violence in America.
It tells the story of musician Mark Barden. After his son Daniel was murdered 11 years ago, he became an activist. Along the way, he rediscovered his lost passion for music.
It’s appropriate that on December 7 — the night before the world premiere — a multi-artist benefit concert at New York University will raise funds (and be filmed for a documentary).
Among the performers: Sheryl Crow, Peter Frampton, Bernie Williams — and Aztec Two-Step 2.0, featuring Westporters Rex Fowler and Dodie Pettit.
Click here for tickets, and more information. Click below for the movie trailer:
Ever wonder what Christmas was like during World War II?
The Weston History & Culture Center’s Coley House is decorated like 80 years ago. It shows what life was like when 3 generations of one family occupied the home.
Guided tours are December 7 (2 and 3 p.m.); December 9, 10, 16, 17, 21 and January 4, 6 and 7 (1, 2 and 3 p.m.).
Tickets are $5 for Weston History & Culture Center members, $10 for non-members. Click here to purchase.
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The Levitt Pavilion is headed to Stamford.
Westport’s outdoor entertainment venue has teamed up with the Palace Theatre. Together they present DakhaBrakha — a world music quintet from Kyiv, Ukraine — this Sunday (November 19, 7 p.m., Palace Theatre, Stamford).
The group embraces folk, indie rock, pop, hip hop and avant-garde styles. Theie show includes global orchestrations and Ukrainian traditional instrumentation.
Click here for more information, including tickets.
Two former 1st selectpersons joined the town’s current chief executive at Christ & Holy Trinity Church, at a memorial service for longtime town volunteer Paul Hammond. Martha Hauhuth served from 1985-89; Jim Marpe served 2 terms prior to Jen Tooker.
From left: Jim Marpe, Martha Hauhuth, Jen Tooker. (Photo/Andrea Moore)
Westport resident John Murphy died Monday. He was 85.
A graduate of the College of the Holy Cross, he had a long career as a sales and marketing executive at the American Can Company.
His obituary says: “John was an eternal optimist, with a kind heart and open mind. His spirit was indomitable, and he was a prodigious hiker and reader, especially history. He was a people person, keenly interested in making connections and naturally curious about everyone he met. John sidestepped small talk, instead, he was out to disarm you, with charm and a wicked sense of humor….
“He was an avid newspaper reader, often found behind a copy of the Wall Street Journal (though an ardent, active Democrat), and always curious and engaged in the world around him. He loved to travel to the European countryside, especially Italy, taking in the history, people, and wonderful food. He loved the Yankees, and the Giants, and accepted his sons’ betrayal with the Patriots.
His and his college sweetheart, Connie Dixon, raised 3 children. He coached them in sports, and was president of the Redding Boys & Girls Club.
In his later years, John found a dear companion in Marleen Salko. They spent years enjoying yoga, walks on Westport’s beaches, and time with good friends. He made great friendships through the Y’s Men of Westport & Weston, especially the hiking group. He also volunteered driving people to medical appointments.
John is survived by his children Mark (Katya), Chris (Jennifer) and Kirsten Hedberg (Eric), and grandchildren Megan, Christopher and Valerie Murphy, abd Finn, Tess and Ingrid Hedberg; Diana and Charlie Healy; his longtime companion Marleen Salko, and sisters Mary and Annie Murphy. He was predeceased by his wife Connie.
A celebration of John’s life will be held at the Westport Library on Saturday, November 25 (2 to 4 p.m.). Family and friends are invited to gather and share memories. In lieu of flowers, please consider a donation to the Nature Conservancy.
John Murphy
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The weather was great yesterday for fishing, at Burying Hill Beach. Let’s hope the fish were biting for the stars of today’s “Westport … Naturally” photo.
And finally … it’s hard for a cartoon character to have a birthday.
But today is considered the official birthday for Mickey Mouse. On this day in 1928 — 95 years ago — he first debuted in the short film “Steamboat Willy.”
(If you found something to do this weekend — or any other day — on “06880,” please consider supporting your hyper-local blog. Just click here. Thank you!)
If it’s November, it must be time for the Giving Assembly.
For several decades, Coleytown Middle School celebrated Thanksgiving with a month-long, school-wide project. Each grade selected one or two organizations or non-profits. Students and parents collected goods or raise money.
Then — on the Wednesday before Thanksgiving — the school gathered together for a Giving Assembly. Recipients described how they’ll use the donations. There was music too, and plenty of good vibes.
The closure of CMS for renovation, and then the pandemic’s prohibition of visitors, put the great tradition on hold.
Thankfully, it’s back.
Newly renovated, Coleytown Middle School returns to an old tradition.
As the school rebuilds a sense of community after a few tumultuous years, enthusiasm for the program is high.
Eighth graders overwhelmingly chose Al’s Angels — the Westport-based charity helping children with serious illnesses — as this year’s recipients. The 2 pods have a “coin war,” to see which collects the most.
Patty Haberstroh
Seventh and 6th graders are raising funds for Westport’s Department of Human Services, and the ALS Therapy Development Institute. They selected both groups to honor Patty Haberstroh, Westport Human Services’ longtime youth director who is battling ALS. For 20 years, she was an instrumental part of Coleytown’s Giving Assembly.
Sixth graders are also collecting donations for Homes with Hope. Executive director Helen McAlinden kicked off the campaign by visiting all 8 classrooms. She described her organization’s efforts to combat homelessness and food insecurity, and inspired the young fundraisers.
PTA volunteers have already delivered some items to the Gillespie Center.
“All year long, we talk about the importance of giving back,” says 6th grade language arts teacher Emily Diggs. “We do a lot of lessons about ‘being your best self.’ This is one more way to do that.”
A large “thermometer” in the hall between the 2 6th grade pods — the Orcas and the Dolphins — is updated every day. Students watch the two groups fight for the top spot.
Last week, the Dolphins held a slim lead.
But, as several wise children told Diggs, “It doesn’t matter who wins. It’s all about giving back.”
Students love to hear stories about their impact at the annual Giving Assembly. COVID means that this year’s version will be virtual — streamed live on Coleytown TV.
That’s a small price to pay, for the return of an important tradition.
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.)
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.
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.”
“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.
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.
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.
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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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:
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.
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.
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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.
