Latest news with #ALSAwarenessMonth
Montreal Gazette
an hour ago
- Sport
- Montreal Gazette
Pointe-Claire soccer tournament raising funds to help fight ALS
By June is ALS Awareness Month in Canada and for the fourth straight year there will be a fundraising soccer tournament this weekend in Pointe-Claire in support of the ALS Society of Quebec. The tournament, in association with Soccer Pointe-Claire, is hosted by Phil Lalonde, a longtime Pointe-Claire resident and soccer coach. The tournament will take place Saturday and Sunday at Terra-Cotta Park in Pointe-Claire with women, men and mixed senior recreational teams taking part. There will be a kids' corner and activities for the entire family, along with a picnic table area for lunch, concessions and a bar. There will also be a silent auction and other fundraising activities to help fight ALS. The tournament raised close to $165,000 during the first three years. Lalonde was diagnosed with ALS — Amyotrophic Lateral Sclerosis, which is also known as Lou Gehrig's disease — in September 2021. It is a rare and incurable neurodegenerative disease that attacks motor neurons, leading to progressive muscular paralysis and total loss of autonomy. 'I've been coaching soccer for more than 30 years and this tournament is my way to raise awareness and funds for this important cause,' Lalonde, who is also known as Coach Phil, said in a news release about the event. 'I believe in keeping a positive attitude no matter what. ALS challenges that every day but so far, with the help of the ALS Society and my army of family and friends, I'm staying true to myself and living my life to the fullest. 'Living with ALS continues to get harder every year, but knowing there are people willing to fundraise with us gives me hope,' Lalonde added. 'I am extremely proud of our accomplishments and know firsthand that this money is being used to fight — and hopefully cure — ALS.' This weekend's tournament will feature a celebrity game at 4 p.m. Sunday between an alumni team made up of some of the best female players from Pointe-Claire, including captain Amy Walsh, against a team made up of a younger generation of female players. Lalonde's daughter, Jillian, noted that ALS not only impacts those living with the disease but also their families. 'Dad's diagnosis changed our family's lives,' Jillian said. 'My whole life, I have called my dad two names, Dad and Coach Phil. On the field, he taught me to be a strong, fearless, and dedicated soccer player but, above all, to trust, support and care for my teammates. 'It is hard to watch a parent's body shrink before your eyes, but I get to watch the lessons he taught me on the field play out in our real life,' she added. 'Dad has shown strength, fearlessness and a dedication to finding the good in having ALS through community. I am honoured to have him coach me through planning an event, raising funds and fighting for a cure.' Former Alouettes player Tony Proudfoot wrote a series of articles for The Gazette while battling ALS and was one of four finalists for the 2010 National Newspaper Award for sports writing. He also started the Tony Proudfoot Fund to raise money for research into the disease. Proudfoot died in 2010 at age 61, three years after his ALS diagnosis. Another former Alouettes player, Michael Soles, died from ALS in 2021 at age 54, 16 years after his diagnosis.
USA Today
23-05-2025
- Entertainment
- USA Today
After ALS diagnosis, Zac Brown Band member pens honest ballad for his daughters
After ALS diagnosis, Zac Brown Band member pens honest ballad for his daughters Show Caption Hide Caption ALS experts seek to increase awareness for case reporting ALS is a really tough, fatal neurodegenerative disease that robs a person of the ability to move, speak and walk. Fox - 2 Detroit In the three and a half years since John Driskell Hopkins was diagnosed with ALS, his voice has slowed a beat and he struggles with balance, often using a walking stick to navigate airports and snaking backstage hallways. But, he says with an optimistic lilt, 'compared to a lot of people, I'm doing great.' He wiggles his fingers on a video call from a dressing room in Cincinnati, where the Zac Brown Band will play that night, to show 'they still work.' Hopkins, 54, has long circled among guitar, bass, banjo and ukulele in the group, which has adapted to any changes he's needed to make to keep his vocal or guitar parts. 'I'm hoping to be out there as long as I can. Sometimes I feel like (performing) gives me more inspiration to keep going,' he says. Though Hopkins' form of amyotrophic lateral sclerosis – also known as Lou Gehrig's disease – is progressing slowly as it attacks his upper motor neurons that primarily affect the brain, he is accepting of a diagnosis with a lifespan that doesn't often extend past five years. 'Something could happen tomorrow and I could be paralyzed,' he says. 'But typically if you get to five years after diagnosis, they may say this is presenting more like PLS (primary lateral sclerosis). But it's a non-starter in the conversation because nothing has changed. It just means a lower progression rate, which I can be grateful for.' John Driskell Hopkins pens song for his daughters The day of Hopkins' diagnosis in December 2021 was devastating. He and Jennifer, his wife of 17 years, had plans to take their daughters Sarah Grace and twins Lily Faith and Margaret Hope, now 16 and 13, to Callaway Gardens in their Atlanta hometown to see the annual holiday lights display. After agonizing over the decision, the couple decided to 'make the best of it' with their girls. But that night, Hopkins couldn't sleep, haunted by the cruel reality of his diagnosis. 'I kept wondering what I could possibly say to my kids about this. You want to try to come up with this fatherly advice,' he says. 'They're kids. They haven't been to college or gotten married. All of these things you expect a parent to help with and be there for, it was looking like I might not be there for it.' The one thought Hopkins couldn't shake was, 'I love you forever,' which he's turned into a song with the same title after working on it for months after his diagnosis with Zac Brown Band comrade Clay Cook. 'It's tricky to think of things that haven't happened yet and try to get ahead of them because you're told your experience is going to be cut short,' he says. The poignant piano ballad, which Hopkins released in May for ALS Awareness Month, is a valentine to his loved ones as he speak-sings lyrics such as 'I don't know how long this body will hold me/but my hope for you is you will grow old/we will be together in the ever after.' The closing verse is especially heart-rending, as Hopkins uses his storyteller approach to quietly offer, 'You girls and your mother/you have one another to hold and lean on/always know that.' Life is slower, but 'business as usual' Hopkins is trying to stay busy both with music – the Zac Brown Band has a few dates through June and he continues to work on his own music, including another Christmas album – and helping others with ALS. Three years ago, he and Jennifer started the Hop on a Cure foundation to support research to prevent and seek a cure for ALS, while also raising awareness about the disease. Hopkins moves his hands to show the regularities of his life these days – 'music, family, foundation. Music, family foundation' – and says he is as involved as possible with the daily undertakings of the organization. 'In the three years we've been a foundation, we've granted over $4 million in research projects. That's no small feat but nowhere close enough to what we need,' he says. 'We have to fund as many research projects as possible because we don't know which one is going to hit. We're learning a lot, but there is still no cure or treatment that will stop it.' Despite the grim truths of his condition, Hopkins is approaching life as 'slower, but business as usual.' He took his daughters and 'a busload of girls' to Olivia Rodrigo and Billie Eilish concerts last year in Atlanta and met up with his bandmates to catch Tool and Pearl Jam. Normalcy is a challenge, but it's become almost a self mandate. 'I do need to get more rest,' Hopkins admits. 'But I don't want to miss out on anything.'
Yahoo
21-05-2025
- Health
- Yahoo
Day of Action on May 22 Highlights Need for Visibility of ALS
May is Awareness Month for Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease WASHINGTON, May 20, 2025 /PRNewswire/ -- In honor of ALS Awareness Month, I AM ALS is rallying the nation on Thursday, May 22 for a Day of Action to shine a light on the devastating realities of Amyotrophic Lateral Sclerosis (ALS), amplify the voices of those affected, and galvanize Americans around our urgency for change. The theme "ALS is here, but so are we" invites advocates, families, and allies to share their powerful stories and take personal actions to build awareness, connection, and hope. Ways to Participate on May 22: Submit an Op-Ed: Use I AM ALS's easy-to-use op-ed template and guidance to submit your story to your local/regional media outlets. Amplify on Social Media: Change your profile photo to the campaign image, and post your story, photos, or videos using the hashtags #ALSisHere and #SoAmI. Tag @iamalsorg to help spread the message even further. Tell Your Story: Share how ALS impacts your life—focus on one real, raw, and resonant aspect. Encourage friends and family to do the same. Educate Your Community: Spread key facts using these graphics about ALS to raise awareness. Support the Cause: Encourage donations to and promote I AM ALS' Congressional funding priorities. Be Bold: Whether it's dyeing your hair blue or hosting a local film screening (learn more about how to host a screening of "For Love & Life" here), creative and courageous acts are welcome and celebrated. "On May 22, we're asking people everywhere to stand with us, speak out, and show up," said Andrea Goodman, CEO of I AM ALS. "ALS is here, but so are we. We are storytellers, visionaries, advocates, and dreamers—and we're not going anywhere. This Day of Action is about community, truth-telling, and visibility." ALS, otherwise known as Lou Gehrig's disease, is a progressive and 100% fatal neurodegenerative disease that affects nerve cells (neurons) in the brain and spinal cord, leading to muscle weakness, paralysis, and eventually death. Approximately 6,000 people in the U.S. are diagnosed with ALS every year. It is projected that the number of ALS cases worldwide could increase by almost 70% by 2040 (source). About I AM ALSI AM ALS is a nonprofit organization leading what STAT News called the most successful patient advocacy campaign this century. We built a community movement to harness collective power and find treatments and a cure for ALS faster, while also creating lasting, systemic change. Our focus is on three areas: Advocating for federal policy change to drive research, support, and treatments for ALS. Improving quality of life by providing volunteer and support opportunities to advocates and people living with ALS. Mobilizing and empowering advocates to raise awareness about ALS and other neurodegenerative diseases, and increase visibility of the ALS experience. Learn more at View original content to download multimedia: SOURCE I AM ALS Error in retrieving data Sign in to access your portfolio Error in retrieving data Error in retrieving data Error in retrieving data Error in retrieving data
Malaysian Reserve
20-05-2025
- Health
- Malaysian Reserve
Day of Action on May 22 Highlights Need for Visibility of ALS
May is Awareness Month for Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease WASHINGTON, May 20, 2025 /PRNewswire/ — In honor of ALS Awareness Month, I AM ALS is rallying the nation on Thursday, May 22 for a Day of Action to shine a light on the devastating realities of Amyotrophic Lateral Sclerosis (ALS), amplify the voices of those affected, and galvanize Americans around our urgency for change. The theme 'ALS is here, but so are we' invites advocates, families, and allies to share their powerful stories and take personal actions to build awareness, connection, and hope. Ways to Participate on May 22: Submit an Op-Ed: Use I AM ALS's easy-to-use op-ed template and guidance to submit your story to your local/regional media outlets. Amplify on Social Media: Change your profile photo to the campaign image, and post your story, photos, or videos using the hashtags #ALSisHere and #SoAmI. Tag @iamalsorg to help spread the message even further. Tell Your Story: Share how ALS impacts your life—focus on one real, raw, and resonant aspect. Encourage friends and family to do the same. Educate Your Community: Spread key facts using these graphics about ALS to raise awareness. Support the Cause: Encourage donations to and promote I AM ALS' Congressional funding priorities. Be Bold: Whether it's dyeing your hair blue or hosting a local film screening (learn more about how to host a screening of 'For Love & Life' here), creative and courageous acts are welcome and celebrated. 'On May 22, we're asking people everywhere to stand with us, speak out, and show up,' said Andrea Goodman, CEO of I AM ALS. 'ALS is here, but so are we. We are storytellers, visionaries, advocates, and dreamers—and we're not going anywhere. This Day of Action is about community, truth-telling, and visibility.' ALS, otherwise known as Lou Gehrig's disease, is a progressive and 100% fatal neurodegenerative disease that affects nerve cells (neurons) in the brain and spinal cord, leading to muscle weakness, paralysis, and eventually death. Approximately 6,000 people in the U.S. are diagnosed with ALS every year. It is projected that the number of ALS cases worldwide could increase by almost 70% by 2040 (source). About I AM ALSI AM ALS is a nonprofit organization leading what STAT News called the most successful patient advocacy campaign this century. We built a community movement to harness collective power and find treatments and a cure for ALS faster, while also creating lasting, systemic change. Our focus is on three areas: Advocating for federal policy change to drive research, support, and treatments for ALS. Improving quality of life by providing volunteer and support opportunities to advocates and people living with ALS. Mobilizing and empowering advocates to raise awareness about ALS and other neurodegenerative diseases, and increase visibility of the ALS experience. Learn more at
Yahoo
19-05-2025
- Health
- Yahoo
What to know about ALS, also known as Lou Gehrig's Disease
NEW HAVEN, Conn. (WTNH) — In today's health headlines, we're recognizing ALS Awareness Month, shedding light on the disease that affects neurons in the brain and spinal cord. Dr. Huned Patwa, a professor of neurology at Yale School of Medicine, explains ALS, also known as Lou Gehrig's Disease, and how it impacts the body over time. Watch the video above to learn more. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
