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“As someone who witnessed my own father’s struggle with ALS and the consequence to my mother, myself and my family, it became clear that some of the most profound pain on the journey came from the sense of isolation,” benShea said. “My hope was that when people heard these messages they would feel someone reaching out and speaking out and speaking to them and they were a little less alone.” “I was thinking about my dad and what he went through, and I wanted to be the voice he lost and the message of strength and love he always lived with – and died with,” said benShea who became The ALS Association’s (ALSA) national laureate in 2005. Noah benShea’s audio messages “In His Own Words,” which debuted at www.alsa.org/benshea in June, are filled with personal anecdotes and metaphors. The messages are accompanied by music and range in length from 2-l/2 to 4 minutes. Each month, a new message in the series will be added to the web site. In reaching out and embracing the ALS community, he talks about such themes as hope, faith, love, character, peace, and change. The goal of the project, he said, was to be “a source of strength to others.” In the message “Hope,” benShea tells the story of a dying woman who instructs her pastor to bury her with a fork in her right hand because after dinner someone would always say “keep your fork.” That meant something wonderful was coming. Later, benShea talks about a little girl walking to school in a thunderstorm. When lightning flashed, she looked to the heavens and smiled because she believed God was taking her picture. “The issues of hope, faith, peace, love, character and change are central in all our lives no matter what we are going through, and the thoughts I recorded are intended to be a source of strength to all of us whether we’re dealing with ALS or simply trying to find the courage to get through the day,” benShea said. “Each of us is ground zero,” he continued. “We cannot be other loving until we are self loving. We cannot offer hope for others until we are prepared to live with hope in our own lives.” Greg Cash, co-producer of “In His Own Words” and ALSA’s director of communications, accompanied benShea to the studio. “You can hear in the tone of his voice his understanding and emotional ties to the people who are going through the process of living with the disease, the patients and the family,” Cash said. “Noah was emotionally involved. It was not like he was reading the news. He did not try for a perfect delivery. It was as though he was speaking to a friend with inspirational messages.” The concept for the project arose after benShea gave an address at ALSA’s 2005 Leadership Development Conference in St. Louis. “The keynote address seemed to speak to people and touch lives, so the folks at The Association asked if I would be willing to share some of my thoughts on subjects of relevance in a way that would allow people to listen,” the poet said. “We wanted there to be a way for people to hear the emotion in his voice as well as being able to read what he was saying,” Cash said. BenShea looks forward to recording more messages. “They will focus on additional topics no less relevant in our lives no matter our struggle.” ALSA’s national laureate, also a philosopher, scholar, executive adviser, lecturer, and international best-selling author, was described by CNN’s Larry King as “the compass because he has – with wisdom, compassion and humor – helped so many of us to find our way.” He is the author of 18 books translated into 15 languages including the famed “Jacob the Baker” series. Be sure to check the web site each month, www.alsa.org/benshea, to listen to the next inspirational message from Noah benShea and learn more about his involvement with ALSA. His insightful perspective on life is presented on Noah’s Window at www.noahbenshea.com. Possible Einstein in the Making
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| Peyton Ennis invented the Razor on Wheels, which he is holding, for his grandfather (right), “Pop” Dan Upperman. |
Yet Peyton Ennis of Delaware, Ohio is not a typical second grader and when pressed on the subject bashfully admits that he may be a genius for having created a contraption that has the potential of helping many people living with ALS and has raised awareness about the disease.
The inspiration for the invention, Razor on Wheels, was the love for his grandfather, “Pop” Dan Upperman. The resident of Groveport, Ohio was diagnosed with ALS in June 2003 and was having problems shaving. Peyton, who came up with idea in only 20 minutes, and Pop have done a lot of fun-filled activities together, including fishing, and “messing around outside,” as his mother Leanna puts it.
His teacher at Carlisle Street Elementary School, and later the judges at a much larger competition, were impressed by the Razor on Wheels. The invention earned him an outstanding grade at the school and then second place at the Invention Convention in Columbus, Ohio in the kindergarten through second grade category. The prototype, which weighs less than one pound, measures 15-l/2 inches high by 5 inches wide and is made out of wood, also finished in the overall top 10 at the convention out of a field of 475 students from seven Central Ohio counties.
“I felt really happy. I just walked up to the stage; I was real excited,” is how Peyton described his reaction to learning his invention was a big hit. The Invention Convention presented Peyton with a $400 scholarship, a trophy and ribbon.
Basically, the Razor on Wheels is placed on a table and the person with ALS holds onto the lower base and moves it back and forth for a shave. The electric shaver sits on the top of the base. Both bases are connected by two columns.
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| Peyton Ennis proudly displays the ribbons and trophy he won at the Invention Convention in May. |
“We are really proud of Peyton,” Leanna said. “He really worked hard on this invention and when it was discovered that Pop would not be able to use it because he has entered the late stages of the disease, he was pretty disappointed, but he kept his head up because he knew it could help other people. He was really excited about being able to do that and make a difference.”
"We are so pleased to have the on-going support of the Upperman and Ennis families at the chapter,” said Marlin Seymour, the executive director of The ALS Association's Central and Southern Ohio Chapter. “The family has been involved in raising money for patient services through their involvement with the Walk to Feet ALS® the past couple of years and Peyton's grandfather’s friends – several hundred of them from his local lodge organization – held a chicken noodle dinner fundraiser to help their Walk team raise money last year."
Peyton dreams of one day becoming a paleontologist or an author; however, the only thing he is certain about is that he wants to keep helping ALSA and perhaps invent another ALS-friendly device.
Since the invention is a prototype, there is a good chance that the Razor on Wheels will eventually weigh less and there could be other tweaks based on the feedback Peyton receives from the ALS community. Leanna has begun to approach different companies that make products for people with disabilities and is gauging interest.
“The next step is that we really want to get this out to people with ALS because we really feel that this can work,” Leanna said.
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| “Iron Horse: Lou Gehrig in His Time” can be purchased for a 50 percent discount by contacting ALSA’s Greater New York Chapter. |
When author Ray Robinson – a member of The ALS Association's Greater New York Chapter Board of Directors – was 11 years old and a reporter for his public school newspaper in Manhattan, he wrote a letter to New York Yankees first baseman Lou Gehrig asking for an interview.
To Robinson’s surprise, Gehrig quickly responded with a nicely composed letter of his own, suggesting that young Robinson show his letter to the Yankee Stadium gate-keeper.
Unfortunately, Robinson was not admitted to the ball park, but he waited until the game was over and met Gehrig, who was on his way home. Robinson found his boyhood idol was “pleasant and congenial.”
Many years later, on July 4, 1939, Robinson was at Yankee Stadium to hear Gehrig deliver his famous farewell speech, at a time when Gehrig had already been diagnosed with ALS. Robinson was deeply touched by the event but waited until 1989 to write a biography about the ballplayer. The book, “Iron Horse: Lou Gehrig in His Time,” was published by W.W. Norton and has recently been reissued in paperback by the same publishing firm.
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| Ray Robinson wrote the book about his boyhood idol Lou Gehrig after leaving a career as a magazine editor. |
In the years before Robinson wrote the Gehrig book he was busy working as an editor at various magazines, including Pageant, Coronet, Good Housekeeping, Seventeen and TV Guide.
In the baseball book, historian Robinson traces Gehrig’s modest beginnings in the Yorkville section of New York City. When the Yankees signed Gehrig, he was in his second year at Columbia University.
Within a short period of time, Gehrig became a slugging partner of the iconic Babe Ruth in the Yankees lineup. The 304-page book traces Gehrig’s success on the legendary Yankees team and his record-breaking 2,130 consecutive games, which earned him the nickname “Iron Horse.”
Robinson acknowledges that the research for the book was challenging, for many of Gehrig’s contemporaries had died and others were in ill health. He does state, however, that Eleanor, Gehrig’s wife, probably never confided to her husband that he was dying of an incurable disease. The book asserts that only the Yankees’ general manager and the doctors who examined him knew the grim facts about his case.
Since he joined the chapter’s board five years ago, Robinson has written a number of articles about Gehrig for the New York Times. He has also helped in getting various honorees to attend the annual ALS dinner. Two years ago, he received the chapter’s Jacob Javits Lifetime Achievement Award, presented to him by TV commentator Bob Costas.
“I hope that I’ve made a contribution,” Robinson said. “But my greatest pleasure is working with such dedicated people.”
When Gehrig’s career ended with the Yankees in 1939 he was enlisted by New York’s mayor, Fiorello LaGuardia, to take a post with the New York City Parole Commission. The job paid about $5,000, not close to what had been his highest Yankee salary of $39,500. Gehrig tried conscientiously to perform the job until the end of his life, which came in June 1941.
In the more than 60 years since Gehrig’s death, he has become a symbol in the ALS movement, someone regarded as a man of dignity, courage and humility. “He never lost hope,” Robinson said.
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| Ray Robinson and NBC broadcaster Bob Costas. |
Robinson lives in New York City with his wife Phyllis, who is a distinguished author of several biographies, and served as cultural affairs commissioner of New York City in the former New York Mayor John Lindsay Administration.
The Robinsons have three children, Nancy, Steve and Tad, and four grandchildren. In addition to his shelf-full of books, Robinson has also contributed articles to the Washington Post, American Heritage, The New York Daily News, The New York Times, Columbia College Today, The Sporting News, TV Guide and Diversion.
The W.W. Norton paperback of “Iron Horse” can be purchased for a 50 percent discount by contacting Jennifer Lowy of the Greater New York Chapter at |
| Questions or comments?
E-mail webmaster@alsa.org or call 800-782-4747.
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