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Associated Press
6 days ago
- Health
- Associated Press
Hundreds of Cyclists to Ride Through Durham, NH, June 21–22, to Raise Funds for ALS Research
Durham, NH June 16, 2025 --( )-- On June 21, the streets of Durham, NH will once again fill with the energy and determination of hundreds of cyclists participating in the 23rd annual Tri-State Trek, a powerful and emotional bike ride raising funds for cutting-edge ALS research at the ALS Therapy Development Institute ( ALS TDI ). Founded in 2003 with just 16 riders, the Trek has grown into a beloved New England tradition expected to draw more than 400 participants this year. The weekend-long ride kicks off and concludes in Durham, looping through scenic routes in Massachusetts and Maine. With one- and two-day ride options ranging from 30 to 100 miles per day, the Trek is open to both avid cyclists and newcomers looking to support an vitally important cause – ending ALS. 'Whether you're an experienced cyclist or someone hopping on a road bike for the first time, the Tri-State Trek is all about community, compassion, and taking action against ALS,' said Carol Hamilton, Senior Vice President of Fundraising and Development at ALS TDI. 'People leave this event with a sense of purpose—and with a new family.' ALS, also known as Lou Gehrig's disease, is a progressive neurodegenerative condition with no known cure. The ALS Therapy Development Institute, based in Watertown, MA, is the world's most comprehensive nonprofit biotech focused 100% on discovering treatments for ALS. 'ALS is relentless. The average patient only lives three to five years after diagnosis,' said Dr. Fernando Vieira, CEO and Chief Scientific Officer of ALS TDI. 'Events like the Tri-State Trek fuel the research needed to bring real treatments to people living with ALS today.' While many riders have a personal connection to ALS, the Trek is open to all. Local residents are encouraged to cheer on riders, join as volunteers, or get involved virtually. The event offers extensive photo and interview opportunities with cyclists, families, and researchers who are committed to ending ALS. Media Opportunities: What: 23rd Annual Tri-State Trek When: June 21–22, 2025 (riders depart both mornings from Durham) Where: Start/finish line at University of New Hampshire, Durham, NH Visuals: Mass starts, team jerseys honoring loved ones, finish line celebrations, rider interviews Interviews Available: Local riders, ALS patients/families, ALS TDI researchers and leadership To learn more about the Tri-State Trek, visit . For media inquiries, ride-day access, or to schedule interviews in advance, please contact: Meghan Lawlor [email protected] | 978-729-2961 About the ALS Therapy Development Institute The ALS Therapy Development Institute (ALS TDI) and its researchers discover and develop potential treatments for ALS. It is the world's first and largest nonprofit biotech focused 100 percent on ALS research. Led by drug development experts and people with ALS, ALS TDI understands the urgent need to slow and stop this disease. Based in Watertown, MA, ALS TDI has more than 30 full-time, industry-trained drug development experts on staff. ALS TDI is internationally recognized as a leader in preclinical and translational ALS research, and partners with pharmaceutical companies and biotech organizations all around the world. Rated a four-star nonprofit on Charity Navigator, ALS TDI spends 87 cents of every dollar raised on finding effective treatments and cures for ALS. Visit for more information. Contact Information: ALS Therapy Development Institute Meghan Lawlor (978)729-2961 Contact via Email Read the full story here: Hundreds of Cyclists to Ride Through Durham, NH, June 21–22, to Raise Funds for ALS Research Press Release Distributed by
Boston Globe
03-04-2025
- Health
- Boston Globe
Former WBZ sports reporter Alice Cook doesn't let ALS stop her from running the Boston Marathon
Now faced with her most daunting challenge, Cook has her athlete's eye fixed on running the Boston Marathon. It will be her second time running the race since being diagnosed with Amyotrophic lateral sclerosis in December 2023. 'ALS Alice they will call me,' she scribbled matter-of-factly on a notepad for a visitor to her home in Cohasset. Though the disease has robbed her of her ability to speak, Cook, 69, is intent on again running the 26.2 miles from Hopkinton to Copley Square, but this time so people will know there is hope to be found in the 'dark places' of dealing with ALS, also known as Lou Gehrig's disease, and because she no longer wants to 'stay in a cocoon' with her story. 'I have some significant ups and downs,' she wrote. 'In the beginning, I could go to dark places and cry, thinking about the severity of my diagnosis. I would worry about not being there for my kids and husband.' Advertisement But family and friends, Cook noted, surrounded her with 'love and optimism' that sharpened her focus in the wake of her diagnosis, buoyed her 'Let's put it this way,' she said. 'I never realized how comforting hugs could be.' Advertisement Running 'makes me happy and strong' Cook has bulbar-onset ALS. A neurodegenerative disease, it primarily affects the region of the brain which controls speech, swallowing, and facial muscles. According the ALS Therapy Development Institute, bulbar-onset is a 'relatively rarer form of the disease,' with some studies finding that nearly 75 percent of ALS patients otherwise are afflicted by the 'limb-onset' ALS that initially attacks legs and/or arms; those patients typically need to use a wheelchair. Cook has remained able to run and maintain an otherwise active lifestyle because her limbs have remained fully functional, with the disease only recently progressing to the lower part of her right leg. When running now, she wears a lightweight, elongated plastic sleeve which stabilizes the back of her leg, running from just below knee level and then wrapping under her foot for added support. Cook uses a plastic support that prevents her foot from dropping and the toes from curling down and tucking below the foot. Erin Clark/Globe Staff To demonstrate, she held up her right arm, using her fingers to represent her toes. The plastic support, she explained, prevents the foot from dropping and the toes from curling down and tucking below the foot. 'My symptoms were mild and I was confident in my ability to run,' she wrote, reflecting on last April's race. 'Now, training and running feels a lot like all the skating I did for so many years. It feels good to do something that makes me happy and strong.' Cook, showing her glee by smiling and repeatedly tapping her fist on the kitchen table, recounted how she got lost on the course last season, unsure to this day how it happened. The serpentine mass of T-shirts and shorts zigged one way in Wellesley and she zagged the other, ending up 'somewhere in Newton' with no runners in sight. She had to flag a local cop to point her in the right direction. Advertisement The whole thing, wrote Cook, after tapping that fist again and again on the kitchen table, 'added five miles to my run.' Her glee said that it made the race even better. Lengthy diagnosis There is no good form of ALS. There is no cure, no knowing its rate of progression, what it will steal next from body and mind. For now, Cook manages her disease with twice-daily injections, usually administered by Patrick Voke, her husband of nearly 40 years, and she also takes a daily whack — 14 pills or more — of oral medications. It took about nine to 10 months for doctors in 2023 to diagnose Cook's ALS. Early in the year, she inexplicably began slurring her words, leading to multiple doctor visits, endless tests, and mounting anxiety. The slurring worsened; her voice faded. Early on, recalled her husband, doctors investigated a potential link to brain surgery Cook underwent a decade earlier for a non-malignant tumor. 'They wondered if there was some neurological correlation,' said Voke, a longtime attorney who began dating Cook when he was in law school. 'But they ruled that out.' More time. More testing. More anxiety. No diagnosis. 'It's something!' Cook scribbled, recalling what she told the stumped medical professionals at the time. 'It's not nothing.' Cook goes through communication cards at her Cohasset home. Globe Staff 'And here she is,' Voke mused. 'As you can imagine, she has always been an A-type personality, Triple A, so for her that kind of thing it's, 'Boom, boom, boom. I want to know!' The dragging on, the frustration of not knowing . . . ' Advertisement Finally, in December 2023, Doreen Ho, a neurologist at Mass General deciphered it as ALS. 'At least we knew,' Voke said. 'Not that the answer made it better.' Hearing her voice again Cook may not be able to speak but, to her delight, her voice is no longer silenced. Thanks to two former WBZ colleagues and the director of ALS augmentative communication at Children's Hospital in Waltham, Cook 'talks' by typing on an iPad connected to a Bluetooth speaker about the size and weight of an egg. Joe Giza and Jackie Connally, longtime producers at WBZ, rummaged through the station's archives for tapes of Cook's on-air work. They handed the tapes to Dr. John Costello of Children's Hospital, who worked with the software company Prior to that, Cook noted, the iPad emitted a 'snobbish British woman's voice.' 'It's amazing how they put my voice together,' said Cook, her AI voice clear, sharp, and above all, self-comforting and renewing. 'I really like hearing my voice again. It is a whole new world.' Typing on an iPad connected to a Bluetooth speaker enables Cook to "talk." Globe Staff Costello, who has worked for decades to give scores of ALS patients their voice back, noted the voice re-creation art form keeps evolving. He culled Cook's 'professional voice', and though she is thrilled with it, he wants to do better by his patient, ideally crafting a more casual, conversational, highlighting nuances of expression. The small Bluetooth speaker, he added, makes a substantial difference in the communicative process, ideally enabling user and listener to share direct eye contact. It's a nuance that often can be lost if the user's voice emits directly from the iPad. 'I think it's such a stripping of humanity when someone is paying attention to your technology and not your face,' Costello said. 'It's the whole social-human connection — people should be looking at you and your eyes, not looking at your device.' Advertisement Olympic aspirations at a young age Cook grew up East Lansing, Mich., and took to the ice early. Her mom made her skating outfits and bargained for ice time at the local rink. The cute local kid with endless energy had Olympic aspirations. By high school, she was allowed to swap gym class for extra time at the rink. Cook (second row, fifth from left) with the US figure skating team that competed in Innsbruck, Austria, in 1976. Courtesy of Alice Cook She loved to skate, not only for the performance art and athleticism, but for the focus and discipline and endless hours of practice that underpin every budding Olympian's dream. In 1976, Innsbruck was dominated in singles by Dorothy Hamill — who just may have borrowed that trademark wedge hairstyle, ahem, from a teammate — while Cook skated pairs with partner Bill Fauver, finishing 12th. Cook and Bill Fauver finished 12th in the pairs competition at the 1976 Winter Olympics in Innsbruck, Austria. Walt Disney Television Photo Arc/ABC In the months leading up to Innsbruck, Cook recalled, she and Fauver practiced daily for four hours, typically midnight to 4 a.m. As the Games grew close, their practice time increased by another four-hour session in the afternoon. She said she often thinks of those hours now as she chugs along the Whitney Spur Rail Trail in Cohasset training for the Marathon. 'We must have skated a thousand hours before Innsbruck' she recalled of her time training with Fauver. 'Skate. Head back to our crappy apartment for breakfast, get some sleep, do it all over again. Loved it.' A 'total pro' on TV Alan Miller, a former executive sports producer at WBZ who worked with Cook for years, acknowledged the 'cruel irony' in her losing her voice. Advertisement 'What made her so great for the job was that she could talk to anyone and get people to talk to her,' Miller said. 'Even more, people wanted to talk to her. And she listened to the answers. I know all that sounds simple, but it's not. She could talk. She could listen. She knew what she was talking about and was great on the air. Total pro.' Cook's background as an Olympic skater, said Bob Lobel, Channel 4's longtime sports anchor who recruited her to the station, was constantly evident in the commitment and discipline she brought to all facets of her job. 'She just wouldn't be denied, and she was able to connect,' Lobel said. 'She was like Tinker Bell, the mystical fairy to make things happen — almost magical. Apart from her movie star looks, she was just smart and aware. She knew the sports. She knew the athletes and she knew how to relate to them.' Cook raises the Stanley Cup at a postgame celebration in Denver after Ray Bourque and the Colorado Avalanche won in 2001. Courtesy of Alice Cook Lobel recalled the chaos inside the Superdome in New Orleans moments after the Patriots defeated the Rams, 20-17, in Super Bowl XXXVI on Feb. 3, 2002. He was preparing to do a live interview with Bill Belichick and it was Cook who fetched the Patriots coach and delivered him to Lobel's spot on the sideline. 'So she brings him over and says, 'Bob, here he is, talk to him,'' Lobel said. Belichick then turned to Cook, Lobel said, 'and he says, 'Uhhh, no, I'd rather talk to you.' It was, 'To hell with you, Bob, I'm talking to Alice.' I don't blame him. I would have done the same thing.' The 'definitive crossover' that existed between Cook's skating and broadcast career, Lobel said, were evident in the way she approached every assignment, every challenge. 'And, I guess it's no different,' he added. 'With what she's going through now.' Back on track Cook keeps her running calendar within easy reach on the kitchen counter. The bad weather late this winter kept her from logging as many miles as she'd prefer, but she's back on track now, confident she'll have built up sufficient base to carry her up Heartbreak Hill, past her beloved Boston College (Class of 1980) and on to the finish line. 'They say if you can run 10,' she said, shrugging as she penned her words, 'you can run 20.' She'll have Patrick, their three adult children, Kelly, Brendan, and Mackenzie, and a legion of extended family, friends, and neighbors to cheer her along the route. She also knows she'll have her cherished Hingham-based faith group praying for her. Her faith, she said, has grown ever more important to her the last couple of years. 'They're a group of over 100 people who say the Rosary every morning on Zoom!' she wrote. 'When I hear them say, 'Continued prayers for Alice,' I feel the love in my heart and soul.' Whatever the challenge, Cook says she's ready to run, be it the famed Boston race on April 21, or the more challenging twists and turns that await down life's road. 'There is no answer to, 'Why me?' or for anyone who gets stuck with this diagnosis,' she wrote. 'There is nothing ALS patients have done to cause their disease. For me, I am trying to find peace by letting go. Rather than hunt for answers, I take solace in the present moment. The 'why' of this is less important to me than the 'now.'' Cook exchanges a high-five after a recent run. Erin Clark/Globe Staff Cook is running in support of the charity , which supports people with ALS and their families. Kevin Paul Dupont can be reached at
