As MLB Honors Lou Gehrig, this A.L.S. A spotlight shines on


San Francisco – Lou Gehrig’s Day Stood on a microphone At Yankee Stadium and, with a few simple words, inspired a nation by their courage and optimism, the disease that was slowly destroying their bodies had not yet done their worst.

Battling amiotrophic lateral sclerosis, a deadly disease that has no cure, and an estimated life span of two to five years, Gehrig apparently called himself the luckiest man on the face of the Earth, behind him. Was already. , Not the quiet agony that lay ahead.

Gehrig will succumb to ALS at the age of 37 within two years, but the disease informally named after him remains, and continues to seek treatment and effective treatment.

On Wednesday, Major League Baseball will celebrate the inaugural Lou Gehrig Day, designed to honor the Iron Horse’s illustrious career and help raise awareness and funds for the disease.

“Eighty-two years after Lu’s speech, patients are going home and doing the same thing Lu did, trying off-label therapy, supplements, and vitamin E,” said Gwen Peterson, a 34 A year-old ALS patient advocate who was diagnosed with the disease in 2018. “We are not far ahead of Lu. So this day is so important.”

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

From the beginning of the process, Peterson cheered and supported a group of volunteers who helped conceive, organize and shape Lou Gehrig Day with MLB, sent by his friend less than two years before Gaya holds a screen shot on her phone of a text message. , Country singer Brian Wayne Gallantine, an ALS victim who died in October. In the text, Gallantine suggested that MLB should be approached about “doing something with Lou Gehrig like he has done with Jackie Robinson.”

Within two years, Gallantine’s suggestion earned the MLB stamp of approval. The event will be celebrated this year on the anniversary of the day Gehrig was first included in the starting lineup as part of a record of 2,130 consecutive games. It is also the day when 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 Brian, and he would have been very happy to see it come true.”

The day has special meaning for some players. Stephen Piscotti, an outfielder for the Oakland Athletics, lost his mother, Gretchen, to ALS in 2018. He called the leaguewide event “a leap forward” in terms of awareness and fund raising for a disease. Estimated 5,700 to 6,400 new diagnoses per year worldwide.

“It is devastating to see someone going through this because the suffering is relentless,” Piscotty said in a telephone interview. “Currently, there is no hope. But we want to change this.”

Although Peterson may not attend the event at Yankee Stadium, his older brother Rob Farnon, a third baseman for Yale in the late 1990s, will be attending on behalf of his younger sister and a close college friend named Jake Bliss, whose He died of ALS in 2012. Farnan will be accompanied by his parents and Greg Janis, a physician who was Peterson’s informal advisor and counselor during an 18-month exam 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 to recruit researchers at a university in 2013 and soon met and fell in love with a director of technical analytics named Nathan Peterson. Soon after, she stumbles and travels, an early symptom – one Gehrig also experienced – of a disease that attacks the body’s nerve cells and leads to complete paralysis.

For most patients in the disturbing aspects of Lou Gehrig’s disease, the only diagnosis is to dismiss all other possibilities. For a year and a half, Peterson did not hear any substantial answers. A doctor told her that she had low blood pressure and was stressed about planning a wedding. Peterson knew better.

Amid growing concern, Gwen and Nate got married in 2017. After less than a year, doctors asked her to put her cases 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, and the harder it seems now, it’s going to get worse.”

Peterson resigned from his job, signed up for Social Security benefits and Medicare and obtained legal status as a disabled. But, if anything, she works even harder now as a member of I AM ALS, an advocacy group for patients that has become her passion. She has also participated in 32 research studies, including a dozen active studies, and was selected to a committee that would appeal to the US Food and Drug Administration to make the treatment more accessible.

She was accepted into an extended access program for an experimental treatment that involves a highly invasive and painful procedure in which modified stem cells are injected into her spinal cord. That treatment, at least, offers some hope beyond vitamins and supplements.

“It’s not for the faint of heart, but I’m lucky to be on an experimental therapy,” said Peterson, who used the same words in his speech. Peterson also considers himself lucky as Gwen’s muscle deterioration has been slower than some. Still, he needs a walker and his speech is slowed down.

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

Merritt Kudkowicz, a neurologist and director of the Healy Center, called Lou Gehrig Day “transformational” in terms of how it would raise awareness and funds for the cause.

“It could be bigger than the Ice Bucket Challenge,” she said, referring to the campaign that raised awareness and raised more than $ 100 million for ALS research by posting videos on social media of ice water to their heads threw away. “It is also the acceptance of all those who died of the disease.”

Kudkowicz treated Pete Frates, a former Boston College baseball player who helped promote the Ice Bucket Challenge before his death in 2019. She recognizes an equally adventurous spirit in Peterson.

“She is such a powerful advocate,” Kudkowicz said of Peterson. “His work is game changing. Over the years, advocacy for people living with the disease and their families has changed the interactions with the FDA and pharmaceutical companies and the scientific community. You want them not to spend their time on it, But it has had a major impact. “

Kudkowicz said that although there is still no cure and no medicine has been proven to prevent or reverse the disease, there has been success in genetic research and potential treatments. But the public, he said, is mostly unaware of how debilitating the disease is.

Gehrig’s own history focuses on his Ironman streak and his moving farewell speech, and is short on his inevitable physical collapse, which broke away from the headlines. in the book, “Luckiest Man: The Life and Death of Lou Gehrig, “ Its author, Jonathan Eag, detailed new research showing how Gehrig, like almost all ALS patients, was forced to use a wheelchair, then to bed, and eventually lost the ability to swallow and breathe. .

Since the book was published in 2005, Eag has been involved with ALS advocacy and stated that the neurologists he has met have a picture of Gehrig on their wall. He said that many patients also gain strength from the example of Gehrig.

“Gehrig is a symbol of strength, not a symbol of disease,” Eig said. “It is important for people that someone like them is connected.”

Peterson is also inspired by Gehrig, and began researching her life soon after her diagnosis. She is eager to celebrate her day when she can. The San Francisco Giants are closed on Wednesdays, so they will celebrate on Thursday. Peterson plans to live there.

Meanwhile, and after that, Gwen will continue her unfinished work with Nate.

“Keep advocating,” she said. “I love the people I have met. I have Nate, I have my family and friends. But people are in this disease, there is a different connection. So, I will continue to advocate and make friends.” “



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