Sunday, August 14, 2022

As MLB honors Lou Gehrig, it shines a spotlight on ALS

SAN FRANCISCO – The day Lou Gehrig stood at a microphone at Yankee Stadium and in a few simple words inspired a nation with his courage and optimism, the disease that was slowly destroying his body had not yet done its worst.

Struggling with amyotrophic lateral sclerosis, a fatal disease for which there is no cure, and with a life expectancy of two to five years down, Gehrig defiantly called himself the luckiest man on the face of the earth, mostly for what was already behind him , not the silent suffering that lay before us.

Gehrig would succumb to ALS within two years, at the age of 37, but the disease that informally bears his name remains, and the search for a cure and for effective treatments continues.

On Wednesday, Major League Baseball celebrates the inaugural Lou Gehrig Day, designed both in honor of the Iron Horse’s magnificent career and to raise awareness and funding for the disease.

“Eighty-two years after Lou’s speech, patients go home and do the same things Lou did and tried off-label therapies, supplements, and vitamin E,” said Gwen Peterson, a corporate 34-year-old ALS patient lawyer who was diagnosed. with the disease in 2018. “We are not much further than Lou was. That is why this day is so important. ”

Lou Gehrig Day will be the third annual event that MLB uses to recognize the achievements of former players. The others honor Jackie Robinson and Roberto Clemente.

Peterson was part of a group of volunteers who helped get pregnant, organize and shape Lou Gehrig Day with MLB. She is holding a screenshot on her phone of a text message sent less than two years ago by her friend, country singer Bryan Wayne Galentine, an ALS sufferer who died in October. In the text, Galentine suggested that MLB be contacted about “doing something with Lou Gehrig, as they have done with Jackie Robinson.”

Within two years, Galentine’s proposal received the MLB approval stamp. The event is celebrated this year on the anniversary of the day Gehrig was brought into the starting lineup for the first time as part of his then-record of 2,130 consecutive games played. It is also the day he died, in 1941.

“I’m really proud of my friends for putting this together,” Peterson said. “It all started with a text message from Bryan, and he would have been so happy to see it come true.”

For some players, the day is of particular importance. Stephen Piscotty, an outfielder for Oakland Athletics, lost his mother, Gretchen, to ALS in 2018. He called the league event “a leap forward” in terms of awareness and fundraising for a disease with a estimated 5,700-6,400 new diagnoses per year worldwide.

“Seeing someone go through it is devastating because the suffering is relentless,” Piscotty said in a phone interview. “At the moment there is no hope. But we want to change that. ”

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Although Peterson is unable to attend the event at Yankee Stadium, her older brother Rob Farnen, a third baseman for Yale in the late 1990s, will attend on behalf of his younger sister and a close colleague named Jake Bliss, who died of ALS in 2012. The father will be accompanied by her parents and Greg Janis, a physician who was an informal counselor and counselor for Peterson during her 18-month ordeal to find a diagnosis.

Peterson grew up in West Haven, Conn., The youngest of four in a family of mostly Red Sox fans. She moved to San Francisco in 2013 to take a job recruiting researchers at a university and soon met and fell in love with a director of tech analytics named Nathan Peterson. Shortly after, she began to stumble and trip, an early symptom – as Gehrig also experienced – of a disease that attacks the body’s nerve cells and leads to complete paralysis.

Among the insane aspects of Lou Gehrig’s disease is that for most patients, the only diagnosis is to rule out all other possibilities. For a year and a half, Peterson did not hear adequate answers. A doctor told her that she had low blood pressure and that she was stressed over the wedding planning. Peterson knew better.

Amid growing concerns, Gwen and Nate got married in 2017. Less than a year later, doctors asked her to get her affairs in order.

“The future is scary,” Nate said last month at the couple’s San Francisco apartment. “It’s hard to see someone you love go through this, and as hard as it feels now, it’s getting worse.”

Peterson resigned his job, enrolled in Social Security benefits and Medicare, and gained legal status as a disabled person. But if anything, she’s working even harder now as a member of I AM ALS, a patient advocacy group that has become her passion. She has also participated in 32 research studies, including a dozen active ones, and was elected to a committee that will appeal to the U.S. Food and Drug Administration to make treatments more accessible.

She was accepted into an extended access program for an experimental treatment involving a very invasive and painful procedure in which modified stem cells are injected into her spinal fluid. This treatment offers at least some hope in addition to vitamins and supplements.

“This is not for the faint of heart, but I’m lucky to be on an experimental therapy,” Peterson said, repeating the same word that Gehrig used in his speech. Petersons also considers himself lucky because Gwen’s muscular decline has been slower than it is for some. Still, she demands a walker, and her speech is slowed.

Because of his advocacy work, Peterson was appointed to two advisory committees at the Healey Center for ALS at Massachusetts General Hospital, a leading global research and treatment center that fights the disease.

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Merit Cudkowicz, a neurologist and director of the Healey Center, called Lou Gehrig Day “transformative” in terms of how it will constantly raise awareness and funding the case.

“It could be even bigger than the Ice Bucket Challenge,” she said, referring to the campaign that raised awareness and over $ 100 million for ALS research by getting people to post videos on social media about ice water being dumped on their heads . “It is also a recognition of all the people who died of this disease.”

Dr. Cudkowicz treated Pete Frates, the former Boston College baseball player who helped promote the Ice Bucket Challenge before his death in 2019. She acknowledges a similarly brave spirit in Peterson.

“She is such a strong lawyer,” said Dr. Cudkowicz about Peterson. “Her work is changing. Advocacy from people with the disease and their families in the last few years has changed the dialogue with the FDA and pharmaceutical companies and the scientific community. You wish they did not spend their time on it, but it has had a big impact. ”

Dr. Cudkowicz said that although there is still no cure and no drug has been shown to stop or reverse the disease, there have been breakthroughs in genetic research and possible treatments. But the public, she said, is mostly unaware of how debilitating the disease is.

Gehrig’s own story tends to focus on his iron and his touching farewell speech and less on his inevitable physical decline that occurred away from the limelight. In the book, Luckiest Man: The Life And Death of Lou Gehrig, author Jonathan Eig detailed new research showing how Gehrig, like virtually all ALS patients, was forced to use a wheelchair, then to stay in bed and eventually lost the ability to swallow and eventually breathe.

Since the book’s publication in 2005, Eig has been involved in ALS advocacy, saying most neurologists he has met have a photograph of Gehrig on their wall. Many patients also draw strength from Gehrig’s example, he said.

“Gehrig is a symbol of strength, not a symbol of disease,” Eig said. “It’s important for people to have someone like him to be associated with.”

Peterson is also inspired by Gehrig and began researching her life shortly after her diagnosis. She looks forward to celebrating his day whenever she can. The San Francisco Giants are out on Wednesday, so they celebrate June 3rd. Petersons plans to be there.

In the meantime, Gwen will continue her involuntary work with Nate by her side.

“Keep talking,” she said. “I love the people I have met. I have Nate, I have my family and my friends. But people in this disease, there is another connection there. So I keep talking and I keep making friends. ”

Nation World News Desk
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