Latest news with #ALSAssociation
Yahoo
3 days ago
- General
- Yahoo
The ALS Association Teams Up with MLB Pitcher Aaron Nola to #StrikeOutALS and Recognize 5th Annual Lou Gehrig Day
Philadelphia Phillies Pitcher Continues Support of Fight Against ALS in Honor of Late Uncle ARLINGTON, Va., May 30, 2025 /PRNewswire/ -- The ALS Association is recognizing the 5th annual Lou Gehrig Day, taking place June 2nd at baseball parks across the country. Lou Gehrig Day honors the legacy of the legendary first baseman, who was diagnosed with ALS at the height of his playing career. He died on June 2, 1941, just two years after his diagnosis. Sadly, ALS is still 100% fatal and can strike anyone at any time. As part of the nationwide effort, the ALS Association will be partnering with baseball teams across the country to host events commemorating Lou Gehrig Day. These events may include pre-game ceremonies, special on-field presentations, guest speakers and fundraising initiatives. "Lou Gehrig Day is an important opportunity to remind baseball fans around the country about the urgent need for a cure for ALS," said Brian Frederick, chief marketing and communications officer for the ALS Association. "Lou was an incredible player who inspired millions but could not beat this fatal disease. With the public's help, we can turn ALS from fatal to livable and then cure it. We have an amazing community of people living with ALS and their loved ones and they need our support." For the second consecutive season, the ALS Association is teaming up with Philadelphia Phillies pitcher Aaron Nola to raise awareness of ALS and support research and care through the the Big League Impact campaign. Nola is donating $1,500 for every strikeout he records to the ALS Association, a $500 increase from last season's $1,000 per strikeout commitment. The cause remains deeply personal to him after losing his uncle, Alan Andries, to ALS in 2021. In recognition of his ongoing advocacy, Nola was recently named a 2025 Philanthropy Award Winner by the Major League Baseball Players Trust, which awarded a $10,000 grant in his honor to the ALS Association. Nola was recognized for his dedication to ALS research and his charitable efforts supporting veterans. "We are grateful to Aaron and everyone in baseball who supports the fight against ALS," said Larry Falivena, a person living with ALS who serves on the ALS Association Board of Trustees. "We may support different teams on the field, but off the field, we are all dedicated to making ALS livable and then curing it. We have made great strides in ALS research and care since Lou Gehrig was diagnosed and we have to keep the momentum going." The ALS Association encourages fans, players, and organizations to join the fight against ALS by finding a Lou Gehrig Day game in their community by visiting or by joining Aaron and his campaign to Strike Out ALS at Together, we can honor Lou Gehrig's legacy, cheer for our beloved teams and make ALS History. About ALS ALS (amyotrophic lateral sclerosis) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. For unknown reasons, veterans are more likely to develop ALS than the general population. About the ALS Association The ALS Association is the largest philanthropic funder of ALS research in the world. The Association funds global research collaborations, assists people with ALS and their families through its nationwide network of care and certified clinical care centers, and advocates for better public policies for people with ALS. The ALS Association is working to make ALS a livable disease while urgently searching for new treatments and a cure. For more information about the ALS Association, visit our website at View original content to download multimedia: SOURCE The ALS Association Melden Sie sich an, um Ihr Portfolio aufzurufen.
Yahoo
3 days ago
- General
- Yahoo
Roanoke man living with ALS is on a mission to help others
ROANOKE, VA (WFXR) — A Roanoke man living with ALS, also known as Lou Gehrig's Disease, is working to spread awareness and understanding about the disease, and make it livable for everyone until a cure can be found. 'I don't think you can ever be ready for a medical change that totally alters your trajectory in life,' said Mark Kary, who is living with ALS. ALS is a neurotmesuclar disease where the brain stops communicating with the muscles. For some, a person might lose the ability to walk, talk, eat, breathe, and it can sometimes be fatal. 'If I want to go into my emails, I can scroll down with my nose,' shared Kary. Mark Kary is 75 years old and is living with ALS. He said that right around the time of his retirement, he started to notice some weakness in his left arm. 'My brother, who was a doctor, found it, and that was about 12 years ago, which is a real anomaly time-wise. And I wasn't diagnosed until about five years ago,' said Kary. Mark's version of ALS is extremely rare. 'Only affected thus far my arms, hands, and shoulders, which have atrophied or, as I like to say, my arms are for decoration only,' shared Kary. Even with the diagnosis, the disease hasn't taken away his appetite for life. Every day the sun comes up is a beautiful day. One of the things I say is, how I get things done is with the hands of others.' Mark Kary His arms, hands, and shoulders might not work as well as they used to, but that doesn't stop him; he said he just had to adapt. 'Think about personal hygiene, anything you can do with your hands. I can't do,' shared Kary. 'I can still brush my teeth with an electric toothbrush, but that does take, you know, a four-step process.' I think you have to have a mission in life, no matter how brief.' Mark Kary 'For most people who have ALS, they don't have the timeframe that I have been blessed with,' shared Kary. And with the time Mark does have, he has created the ALS Red Ball Express. It's a visual and digital aid that you may have spotted on the back of cars. 'I want people to walk over and point their phone at it and get a connection to information,' said Kary. Whether it's connecting people with information or raising funds for the ALS Association, Mark is on a mission to ensure there is a visual representation of ALS on the roads in Roanoke every day of the year. Mark's story doesn't end, He's also been busy advocting for disabled people with adaptive access in Roanoke. A few years ago, he spoke with the City Manager, and helped put in place the Star City's first 'open access barrier-free parking' in downtown. Those are parking spaces specially set aside for disabled drivers, so they can park in timed spaces, for up to 10 hours. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Yahoo
21-05-2025
- Health
- Yahoo
May declared as ALS Awareness Month in Kingsport
KINGSPORT, Tenn. (WJHL)—At Tuesday's meeting, the Kingsport Board of Mayor and Aldermen presented a proclamation declaring May as Amyotrophic Lateral Sclerosis (ALS) Awareness Month in the city. Ron Codispoti, whose father passed away from ALS in January of 2024, received an email from the ALS Association regarding the awareness month. 'There was an email that we had gotten that reached out to multiple people in the ALS community,' he said. '[It said to] reach out to your local board of mayors, representatives in any way. And so I did.' Codispoti received a response from the city, stating the proclamation would be made at the May 20 Board Meeting. Kingsport Mayor Paul Montgomery presented the proclamation to Codispoti, alongside family and friends. 'It's great to have it, to be more aware around not only this community, but hopefully more communities around the area, especially the Tri-Cities,' Codispoti said. Codispoti said the proclamation is about bringing awareness to the disease. 'I want everybody to know that ALS is a disease that is very hard on families,' he said. 'Not only on the person who receives this [diagnosis]. And I want everybody to know that if we band together, we can find a way to either find a cure or some way of not making this a last chance.' Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Yahoo
13-05-2025
- Health
- Yahoo
Remember the Ice Bucket Challenge? It's back.
More than a decade after the viral trend first got its start, thousands of people are dusting off their buckets and dumping ice water on their heads all over again—but this time, for mental health. The viral 2014 Ice Bucket Challenge raised $115 million in six weeks for what was, at the time, a severely neglected disease—amyotrophic lateral sclerosis (ALS), which degrades nerve cells in the brain and spinal cord over time, leading to loss of muscle control and, ultimately, the ability to talk, move, eat, and breathe. But the global social media phenomenon did more than that. It forever changed the trajectory of ALS, leading to the discovery of disease-specific genes and treatments, greater scientific collaborations, and technology that improved patients' quality of life. (A decade later: How the ALS Ice Bucket Challenge made a lasting impact.) But how did those close to the original challenge feel about the revamped version—and what progress has been made since? We spoke with Patrick Quinn, father of the late Pat Quinn, one of the original Ice Bucket Challenge's three co-founders, as well as Brian Frederick, chief marketing and communications officer for the ALS Association (ALSA), to find out. After losing friends to suicide, Wade Jefferson, a student at the University of South Carolina, wanted to work towards squashing stigmas around mental health. He started the college's Mental Illness Needs Discussion (MIND) club, and thought a reimagined ice bucket challenge could breathe new life into mental health advocacy. Thus, the recent #SpeakYourMIND Challenge was born. The campaign, which launched March 31, has raised nearly $420,000 for Active Minds—the largest nonprofit in the United States that's working to change mental health norms among teens and young adults. It has even attracted some high-profile attention, including from former NFL quarterback Peyton Manning and TODAY show host Jenna Bush Hager. While the campaign began to pick up some steam, some feared the revamped social media trend might take away from spotlighting the challenges associated with ALS. At the same time, people on social media were tagging the ALSA in their videos, connecting the original driving factor behind the trend with mental health. Shortly after, the ALSA and Active Minds joined forces to raise awareness for both causes, using the challenge to bring attention to the fact that ALS doesn't just affect people physically, but emotionally as well—a reality that isn't often discussed. 'Even in ALS support groups, mental health is something that was never brought up,' says Quinn. 'It was always physical. But when you really peel back each of one of those negatives, how much mental impact does that have?' Also known as Lou Gehrig's disease, ALS affects roughly 30,000 people in the U.S., and most live only two to five years after symptoms develop. Because much more progress is needed to address patients' debilitating loss of function, Quinn feels like the mental health of these patients has been put on the back burner. Even though ALS was first identified more than 150 years ago, few studies have analyzed how the disease impacts mental health and vice versa. At least one questionnaire found that as physical impairment worsens among those with ALS, so does depression. Other self-reported surveys show that up to 64 percent of ALS patients feel depressed and 88 percent feel anxious. A 2019 study even found that poorer emotional well-being was associated with faster disease progression. Quinn, who watched his son battle ALS for seven-and-a-half years, said it can be difficult to recognize how people with the disease feel, especially once they lose the ability to speak, and even more so 'because they have a funny way of hiding it to avoid being a burden on their families.' (9 simple ways to boost your mental health, according to science.) But hope is on the horizon for ALS patients and their families. A study published in January found that Qalsody—the first gene-based therapy for ALS approved by the FDA in 2023—not only slows the progression of a rare form of the disease, but also helps restore patients' function. Companies are also leveraging AI tools to search through massive datasets to pinpoint biological targets that can help accelerate drug discovery and development, says Frederick. And advancements in technology are continuing to help ALS patients who have lost the ability to speak to communicate with others. 'There are many more things now that make it easier for them to not just give up,' says Quinn, adding that he's grateful that the #SpeakYourMIND Challenge has opened his and others' eyes to the importance of mental health for ALS patients. 'ALS doesn't have a face until it comes into your house' he says. 'One of Pat's big things before he passed is, no matter how bad things get, find a reason to find your smile—and just keep going.'
Yahoo
08-05-2025
- Health
- Yahoo
One woman's mission to fight ALS: Lou Gehrig's Disease Baseball Classic
SYRACUSE, N.Y. (WSYR-TV) — Multiple varsity baseball teams around Central New York and Rochester are taking part in the strikeout Lou Gehrig's Disease Baseball Classic at NBT Bank Stadium this week. Jolene Todd is an advocate and volunteer for the ALS Association, who is putting on the event. Her father passed away back in 2023 after his fight against ALS. They bonded over baseball, even though they were fans of rival baseball teams. 'He was a diehard Yankees fan. It was always a little battle we had because I was a Red Sox fan. We went to several Yankee-Red Sox games,' she said. After he was diagnosed with ALS in 2021, he gave himself and his family a mission. 'It was his goal upon his diagnosis that he wanted to help the community,' Todd said. 'So, we thought the best way to do that was to raise money for the ALS Association and to help local families living with ALS.' Helping those families through different kinds of events, like the Strikeout Lou Gehrig's Disease Baseball Classic, and getting more young people to step up to the plate. 'I think it's a great way for kids to start to become aware that this is an issue in the community,' Todd said. 'It's also for any of our young student athletes who might be going into the sciences and research, this is a field they will work towards.' The last day of games is tomorrow, May 9. There will be a softball tournament held at the Gillette Road Softball Complex starting at 4:30 p.m. The ALS Association will also be holding a walk on September 27 at Long Branch Park. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
