ALS ONE

November is National Family Caregiver Month and as we near the end of this month and give thanks to so many, we pay tribute to all ALS family caregivers who give of themselves every single day for the ones they love - and we also know that ALS family caregivers come in all sizes and at every age. Meet Kelly McGinn, who is 40 years old and was diagnosed with ALS just last year. What began as a seemingly minor issue in one of her fingers escalated into the worst diagnosis she and her family could ever imagine. Kelly is so grateful to all who are always by her side to lend the hand that now does not work. Included, as pictured, is her sweet little daughter, Danica, and her cherished fiancé, Adam. Kelly is amazed at Danica because at just 8 years old, she says that “Danica helps me with lots of everyday tasks, like putting my hair up and helping me open things that require two working hands. She’s the best helper and I love her so much!” Every day of this month and all months, we honor and salute all ALS family caregivers. With your unwavering love, dedication, strength, and compassion, you are making your loved one’s world a much brighter place. We are all lucky to have you and we are all here for you always. End ALS. . #ALS #ALSONE #FamilyCaregiverMonth #Caregivers #ALSCaregivers #cALS #pALS #Selfless #Loving #Dedicated #Unconditional #Compassionate #EndALS

Join us tomorrow, November 26th at 4pm EST for the first of two webinars on AI in ALS research. For tomorrow's, we'll delve into the Publication, “Identification of Therapeutic Targets for ALS Using PandaOmics – An AI-Enabled Biological Target Discovery Platform.”, with featured author, Dr. Jeffrey Rothstein, MD, PhD, from the Robert Packard Center for ALS Research at Johns Hopkins. On our panel for this review is Brian Andre, Northeast ALS Consortium (NEALS) Research Ambassador; Dr. Christina Fournier, MD, MSc, Associate Professor, Neurology, Emory University School of Medicine, and NEALS NICE Committee Co-Chair; Kevin Robinson, NEALS Research Ambassador; and Jennifer DiMartino, Executive Director of ALS ONE. ?? The ALS PRS aims to connect the authors of important ALS research publications with the ALS community, an initiative we are honored to collaborate on with NEALS. Join us as we review the ALS publication: Registration for the webinar is free for all but required, and we hope you'll join us. ?? Registration is open to all, by clicking: https://lnkd.in/eJHH78N7. ?? We also invite you to read the publication ahead of time if you have yet to, by clicking the link in our bio or going to https://lnkd.in/eMn7M4Vs. . #ALS #ALSONE #NEALS #ALSONECommunityConnect #ALSPublicationReviewSeries #AI #AIinALS #ALSCommunity #ALSAuthors #ALSCommunity #EndALS

This Thursday, November 21st at 5:00 pm EST, hosts Merit Cudkowicz, MD, MSc, and Sabrina Paganoni, MD, PhD of the Healey & AMG Center for ALS at MGH welcome special guests, Dr. James Berry and Dr. Bob Bowser to our Community Webinar series! Join us as they provide updates about Access for ALL in ALS (ALL ALS), share ways to stay connected to news in ALS research, and answer questions from the audience. Registration is open to all and free but required, at: https://bit.ly/3KKsme2. Questions: If you have questions or comments that you would like addressed on this week's call, we ask that you kindly submit in advance by emailing: [email protected]. . #ALS #PlatformTrial #HealeyHope #ALLALS #ALSCommunityWebinar #ALSONE #Unit

Calling all Pickleball lovers! Join us for a 24-hour Picklethon for ALS starting on Friday, January 24th at 5PM through Saturday, January 25th at 5PM at Martini’s Indoor Pickleball & Athletic Club in Stoughton, MA! All ages and experience playing pickleball are welcome to pick a time slot or several during the 24-hour time frame. Whether you are a pickleball player working on your DUPR rating or a new player looking to learn more about the sport, get your friends and family and join us for this unique and fun event, followed by a celebratory get together on Saturday. To register, go to?https://lnkd.in/eYRypJbh.?Select one or more of the available times and help support ALS research & care! Head to the official Picklethon for ALS Facebook page for step-by-step registration information and all further event details! https://lnkd.in/eSahq25M #PicklethonforALS #Pickleball #ALSONE #EndALS #MartinisIndoorPickleball #Playbypoint #PickleballforALS

Please join us this Thursday, November 14th at 5:00 pm EST with hosts Merit Cudkowicz, MD, MSc, and Sabrina Paganoni, MD, PhD of the Healey Center for ALS at Mass General Department of Neurology for the latest updates. They will be joined by David Walk, M.D., F.A.A.N., Head of the Neuromuscular Division at the University of Minnesota, and David Kolquist of Never Surrender Inc, to discuss to discuss Expanded Access for ALS and collaborative efforts to make EAPs more broadly available. Registration is free but required, at: https://bit.ly/3KKsme2. Questions: If you have questions or comments that you would like addressed on this week's call, we ask that you kindly submit in advance by emailing: [email protected]. #ALS #PlatformTrial #HealeyHope #ALSONE #Unity

On Veteran’s Day we honor, respect, and are extremely grateful for all our nation’s veterans,?who sadly and unfairly?are twice as likely to be diagnosed with ALS than those who did not serve. We work hard every day to get closer to the day this horrible disease no longer exists. Pictured is Paul Roy Sr. who honorably served our nation before being diagnosed with ALS.?Our battle against the disease continues until there is a cure. Join us in our journey to END ALS. #Veterans?#VeteransDay?#ALS?#HonoringOurHeroes?#AmericanHero?#AmericanHeroes?#ALSHeroes?#ALSVeterans?#EndALS?#ForOneAndAll?#ALSONE

On Sunday, November 3rd we had Tucker Toss 6 Cornhole Tournament take place in its brand new location, Barrel House Z brewery in Weymouth and it was an incredible day! From the perfect sunny day outside, to a full house of just under 40 teams participating in the cornhole tourney, a very lively and fun kids zone, and the welcoming staff of Barrel House Z and their delicious beers on tap, every part of the day was met with great vibes! Tucker Toss was started by Tucker Wood and his loving wife Lauren, and now two years after loosing Tuck to ALS at the young age of 39, his legacy event is a great day for not only his friends and family, but so many members of the ALS community to be together to have a great time, make lasting memories and raise money for ALS research and care. This year, from the team registrations, event sponsorships, donations, money raised from the creative raffles that were donated, and a generous donation from an anonymous sponsor, Tucker Toss 6 raised an incredible $25,000!! We are extremely grateful for everyone who played an instrumental role in making Tucker Toss 6 a huge success! A special thank you to Jeff Blanchard and his partner Lauren of South Shore Cornhole for always being there by providing all of the cornhole boards and providing the equipment that is needed to run the tourney. To the staff at Barrel House Z for donating their space and for being so incredibly helpful with letting us take over their space indoors and outdoors, A huge shout out who made the day such a success – to all of those who donated items for raffles, helped with set up, and a thank you to our kids zone volunteers, including Sarah with Silly Faces by Sarah for the fun facepaints! Lastly, to Lauren and Eloise for their effort to bring everyone together to honor Tucker, we have no doubt he was with us in spirit enjoying every moment! Thank you all for coming together to help us toss out ALS – we are grateful for you all! #TuckerToss6 #BarrelHouseZ #Cornhole #TossOutALS #ENDALS #ALSONE #Tucker

26.2 x 10 in the books ? ????♀??????and oh what an incredible day it was this past Sunday, when our team of 10 absolutely inspiring and rockstar runners all ran The TCS NYC Marathon to support our ALS research and care! We are humbled by, grateful for, and proud of all our runners who each put their entire ALS-shattered hearts into the past 6 months of grueling training and fundraising to support our mission against the disease that has impacted their lives so devastatingly. Our amazing team consisted of Beth Helenius and her daughter Emily, who ran in memory of their aunt, Maryellen Standring; Brianna Rosenberg ran in memory of her aunt Ann Sermos; Charlie Melvoin, ran in memory of his aunt, Sue Melvoin; Courtney Rhoads ran in honor of her uncle Stevie Rhoads; Mike Garcia ran in memory of his wife, Nicole Ferrari; Nicole Downey ran in memory of her step-mom, Lori Pullman; Sean Kelly and great friend Patrick Coleman both ran in memory of Sean’s dad, John “The Kellster” Kelly; and Taylor Gordon ran in memory of her papa, Fred Humm. . All had different “Why’s” in their hearts but collectively they had one goal: To help make the world of ALS a better place – and that they most certainly did, raising over $70,000 which will help in advancing critical ALS research and providing essential equipment to individuals who are currently living with ALS!?? . Such a remarkably inspiring class - our 2024 NYC Marathon Team! We are all immeasurably grateful for each of them and for every single person who has so generously donated to support their fundraising for us. We know that the race does not mend their hearts and our own hearts go out to all of them and their families. We will keep them and their “why’s” in our own hearts always. . If you’d like to donate but have yet to, there is still time at?https://lnkd.in/eVjqEa_v. We're also sending our heartfelt gratitude to everyone at the NYRR for all of their ongoing support, encouragement, and positivity. Being an Official Charity Partner of the TCS NYC Marathon means the absolute world to all of us and to all who run to support us in honor of their loved ones. . #ALS #ALSONE #ALSONENYCMarathonTeam2024 #TSCNYCMarathon #Marathoners #AmazingPeople #IncredibleImpact to #Help #EndALS #TheyRanLikeTheWind with #ALSWarriors in their #Hearts

NOV 13-15th: Join us for our 7th Annual ALS Research Symposium! Come gather with us from afar (held via Zoom so that anyone can attend easily from anywhere in the world), for our highly anticipated 3-day annual conference & listen in on presentations & talks from many of the world’s most prominent leaders in ALS research. On DAY 1 (11/13), 12 renowned ALS keynote speakers will give talks on important ALS topics including: The current clinical trials landscape, Innovation in trial design, New approaches to understanding sporadic ALS, miRNA’s, Somatic mosaicism, IPSCs modeling, the ALS exposome, subclassification, using neurofilament in clinical trials, ALS risk factors, outcome measures, ALL ALS, & more, from these esteemed researchers: Sabrina Paganoni, MD, PhD, Jeremy Shefner, MD, PhD, FAAN, Melanie Quintana, PhD, James Berry, MD, MPH, Jaime Raymond, MPH, Stephanie Melillo Fradette, PharmD, Ammar Al-Chalabi, PhD, Eran Hornstein, PhD, Justin Ichida, PhD, Eva Feldman, MD, PhD, Zinan Zhou, PhD, Dame Pamela Shaw, MD, FAAN, along w/moderators, Dr.’s Sabrina Paganoni and Robert Brown. On DAY 2 (11/14), presentations will be given from 19 members of the ALS pharma industry about current trials for which they are currently working or have recently completed towards effective treatments for ALS. We’ll hear from Acelot, Aclipse Therapeutics, Amylyx Pharmaceuticals, Arbor Technologies, Axoltis Pharma, Eikonizo Therapeutics, Kadimastem Ltd., Leal Therapeutics, Mitochon Pharmaceuticals, Inc., Modality.AI, Neurizon, NeuroSense Therapeutics, OrphAI Therapeutics, PLL Therapeutics, Prilenia, Spinogenix, Inc., Transposon Therapeutics, Inc., uniQure, Zydus Group Lifesciences. Day 2 will be moderated by James Berry, MD, MPH, and Fernando Vieira, MD. On DAY 3 (11/15), Indu Navar & EverythingALS, along with Leigh Hochberg, MD, PhD from The Ctr for Neurotech & Neuro-Recovery at MGH will converse with industry leaders from renowned companies including Compass AI, Critical Path Institute (C-Path), MGH, MIT, Passio AI, Regeneron, Microsoft, Modality, Temple University, and more.?The focus will be on sharing the effects & outcomes of the transformative power of collaboration between tech companies, pharmaceutical giants, and academic institutions. Explore how AI & neurotechnology are driving innovation & accelerating the development of new treatments and technologies for ALS. With immense gratitude to our Symposium Sponsors: Mitsubishi Tanabe Pharma America, Amylyx Pharmaceuticals, Biogen, Sanofi, Spinogenix, Inc., and QurAlis. This conference would not be possible without your generosity! All are welcome & reg is free but required at https://lnkd.in/gi2yUywH . #ALS #ALSResearchSymposium #ALSconference #ALSGlobalSymposium #ALSVirtualSymposium #AllAreWelcome #ALSONEResearchSymposium #RegisterForFree

Happy Halloween! ALS is scary, stay safe & have fun! #ALS #ALSONE #Halloween