Tag Archives: Lou Gehrig’s Disease

Rob Eichler: ALS Story Comes Full Circle

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.

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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.

Remembering Patty Haberstroh

Patty Haberstroh — a longtime beloved Westporter, who in decades of service touched the lives of countless residents, and whose courageous 6-year battle against ALS (Lou Gehrig’s Disease) inspired many more — died peacefully on Monday, at Yale New Haven Hospital. She was 73.

Patricia Clark Haberstroh’s 20 years as a social worker in Westport’s Department of Human Services were dedicated to helping others in need.

Patty Haberstroh

As family program coordinator, Patty ran and supported countless important initiatives: the annual Back-To-School program that offers backpacks, school supplies and shoe store gift cards to hundreds of children from low-income families; the Family Holiday Giving program, which provides Westport children in need with holiday gifts; the Westport Mentor program; summer camperships; after-school scholarships; Thanksgiving dinner donations; MLK Day basketball clinics; Minds in Motion, and Prom and Graduation Gowns programs.

Patty also took immense pride in volunteer work for Westport’s public schools, serving as PTA president of Coleytown Elementary and Staples High Schools, and on the PTA Council.

One of her proudest achievements was as a member of an ad hoc committee to reject a referendum attempt to cut town education expenses by $1 million in the mid-1990s.

Around that time, Patty also was a key member of the “new” Staples High School planning committee.

She was a masterful storyteller and, most importantly, a trusted colleague and friend. In Westport, she cultivated a vibrant community of true friendships built and tended to over a myriad of Friday Pizza Nights.

Her dogged commitment to helping others was only bolstered in October 2017, when she was diagnosed with her terminal illness.

Faced with a degenerative disease with no cures or effective treatments, Patty sought to reverse that fate for current and future generations of people living with Lou Gehrig’s Disease.

Shortly after her devastating diagnosis, Patty became an influential leader in the ALS community through her relentless advocacy and fundraising efforts. She and her family launched the viral #ALSPepperChallenge campaign on social media, raising over $1 million for ALS research, largely benefiting the ALS Therapy Development Institute (ALS TDI).

Thousands of supporters from around the world posted videos of themselves eating hot peppers in honor of Patty, and to raise awareness for ALS. Celebrities like Kelly Clarkson, Jimmy Kimmel, Andy Cohen, Shaquille O’Neal and Charles Barkley participated in the challenge, chomping on jalapeños and habaneros on national television.

Patty never liked spicy food, but happily devoured it for the cause.

Patty Haberstroh and others suffering from ALS were honored by NASDAQ in New York City, in 2018.

Patty was deeply honored to receive ALS TDI’s 2018 Stephen Milne Adventurous Spirit Award for her selfless advocacy, and MDA’s Wings Over Wall Street Spirit Award in 2020.

Her unwavering tenacity inspired her sons to help launch a grassroots Lou Gehrig Day committee. Beginning in 2021, they established an annual awareness day every June 2, in honor of Lou Gehrig and across all of Major and Minor League Baseball.

There are only 3 such days in MLB, where a league-wide athlete and associated cause is celebrated by all teams.

Born November 23, 1949 in New York City, Patty was the daughter of the late William Lee Clark and Patricia Braden Clark, who nicknamed young her “The Unsinkable Molly Brown” and “Pollyanna.”

The oldest of 4 children, Patty attended Darien High School, then graduated from Smith College with a BA in government.

An avowed feminist, Patty started her career in finance at Bank of Boston. Upon hearing that her male trainee counterparts earned more than female trainees, she marched into Human Resources.

After hearing traditional arguments of why the pay imbalances were justified, Patty successfully secured equal pay for all.

In Boston she met her husband Charlie Wesley Kelakos Haberstroh, who was also a banker.

When Patty and Charlie married in September, 1974, she relocated to Chemical Bank in New York — appropriately enough in Human Resources, to manage the Performance Evaluation Function.

After the birth of her second child, she requested a part-time job.  When her employer asked her to reconsider, pointing out she would have to give up her management job, she said she would accept only a part-time job in order to tend to family. When informed there was no part-time job, Patty requested the bank to create one.

They did.

In 1986, with 4 children under the age of 6 in tow — including twin newborns — Patty and Charlie moved the family to São Paulo, Brazil, to support Charlie’s career.

After 4 1/2 years there, and becoming fluent in Portuguese, the Haberstrohs moved to Westport, where she committed her life to public service and education.

Patty is survived by Charlie, her husband of 49 years and caregiver for 6; her children Chuck (Jacqueline Horelik) of Westport; Steve (Erin Graves) of New Canaan; Kim O’Sullivan (Philip) of Norwalk; Tom (Allison Hall) of Charlotte, North Carolina; grandchildren Charlie, Lane, Eve and Grace of Westport; McIntyre (Mac) and Walker of New Canaan; Jonathan O’Sullivan of Norwalk; Madelyn and Molly of Charlotte, NC; her younger brothers William (Susan), Hayes (Clare) and Robert Clark; nieces Katie, Debbie and Joanie, and nephews Braden, Lee and Christopher.

A celebration of Patty’s life will be held in early Fall in Westport. In lieu of flowers, please consider a donation toALS Therapy Development Institute, Compassionate Care ALS and Human Services of the Town of Westport.

(“06880” covered the explosive growth of the #ALSPepperChallenge, in Westport and around the world. Click here for some of the stories about the global event.)

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.

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.

Arm In Arm For ALS

Last Sunday, Sherwood Island State Park hosted an ALS Walk. Among the thousands of participants, 70 formed a special team.

Dottie Kyle’s husband Bob is a 1964 graduate of Staples High School. She has ALS — Lou Gehrig’s Disease — and the “Go Dottie Go!” team came from around the country to support her.

David Knapp is a longtime friend of the Kyle family, who lives near them in North Carolina. On his way to Westport, he realized  he had forgotten to raise any money for the event.

He quickly emailed some close friends. He promised that if he could raise $1,000 within the next 24 hours, he’d wear a tutu at the Walk.

He did, and he did. Here he is, with Dottie:

David Knapp and Dottie Kyle

Dottie is no slouch either. Since August of last year, her ALS has progressed from her chest and throat muscles to her legs.

But she wanted to be involved with her support group, so on Sunday Bobby pushed her in a wheelchair.

Twenty feet from the finish line she raised herself out of her chair, grabbed the arms of her daughter Krissy and son Brian, and walked over the finish line.

Dottie Krissy and Brian Kyle

They don’t call it the ALS “Walk” for nothing.