ALS ONE

It was ONE magical day last Saturday, May 4th, in Los Angeles as over 30 celebrity daytime actors and actresses gathered in a day-long event to support our mission. DAYTIME UNITES TO END ALS, held at the Embassy Suites in Glendale, was graciously hosted by the award winning Nancy Lee Grahn, who has starred as Alexis Davis on General Hospital since 1996, and before that, was known for her Emmy winning portrayal of Julia Wainwright on Santa Barbara. Nancy became involved in ALS ONE after becoming very close with one of her biggest fans, Michelle Strojny, who has been very bravely living with ALS since 2018. Michelle and all of us at ALS ONE have been extremely close since her diagnosis. She inspires us every day and she is such a big part of our fabric. After two extremely successful virtual events for us over the past two years, Nancy Lee had a bigger idea. “Let’s have a huge event in LA and I’ll invite all of my very talented and very amazing daytime colleagues and it’ll be amazing!” The plan was hatched last August and came to full fruition in the biggest of ways. The Daytime Stars definitely united and made quite an incredible impact on our hearts and our ALS research and care – raising over $65,000! In addition to the phenomenal funds raised, it was what it did for the heart of Michelle, who traveled by plane for the VERY first time since being diagnosed. Coming out of her comfort zone to do so, she navigated each phase of travel with strength, courage, continual smiles, and not a single complaint – that’s Michelle to a T!  We are all overwhelmed with gratitude for each person who took coveted time out of their weekend to make the world of ALS a better place. It was such a special honor to meet and spend so much time with so many incredible people who showed nothing but immeasurable kindness all day and all night long. From the actors and actresses to the band, East Bay Soul who played their famed hearts out after the celebrity event, to the fans themselves, all of the event volunteers including Joanie, CC, Katie, and Nancy A, lead by Belinda Bast and Angela Coutoumas with whom we worked so closely for months on the details of this (continued in comments)

Celebrating International Nurses Week and honoring all nurses with very special emphasis on those who care for individuals living with ALS. In Multidisciplinary ALS Clinics, nurses serve as vital links between patients, families, and the entire team. They assess patient needs, monitor symptoms, coordinate tailored care plans, provide invaluable support, often including after-hours chats, and guide patients and families through the many complexities of the ALS journey, by remaining by their side throughout. They have the biggest hearts, and their dedication and unwavering compassion significantly impact the quality of life for those living with ALS. We admire and are so very grateful for all ALS nurse heroes. . #ALS #ALSONE #ALSNurses #InternationalNursesWeek #EndALS

ALS AWARENESS MONTH's FACES OF ALS Gallery of Courage and Strength. Brian Shifrin, 43, from Southborough, MA. We lost our dad, Brian Shifrin, on 11/16/19. My brother Charlie and I were only 11 & 13. It’s hard for me to remember my dad when he didn’t have ALS. I do remember we used to watch Young Sheldon together, he was my baseball coach, and he gave the best hugs. I wish you were here dad to see our games and make us laugh. I love you so much. 💚 Courtney ("Cece Girl") . To submit a tribute about you or for your ALS hero, simply click the link in our bio or go to: https://bit.ly/FOALS24. All tributes are submission-based, and we will honorably include all who would like to be featured. . #ALS #ALSawarenessMonth #FacesOfALS #BrianShifrin #SouthboroughMA #ALSangel #FacesOfCourage #FacesOfStrength #May #EveryMonth #pALS #cALS #Courage #Strength #Honor your #ALShero #ALSangel #AnyTown #OneWithALSisTooMany #ThisIsWhyWereHere #EndALS

ALS AWARENESS MONTH's FACES OF ALS Gallery of Courage and Strength. Steve Marshalek, 62, of S. Dartmouth, MA. I am the proud daughter of Steve Marshalek, who received his ALS diagnosis on 3/25/24. My dad and my mom have been married for 36 years and have 3 children together. They are also grandparents to my 1-year-old daughter. My dad is a lawyer, New England Patriots fan, former youth sports coach, and golfer. Dad, you have so much to live for and a world of support behind you. I love you so much, Dad. Keep going. 💚Abby . To submit a tribute about you or for your ALS hero, simply click: https://bit.ly/FOALS24. All tributes are submission-based, and we will honorably include all who would like to be featured. . #ALS #ALSawarenessMonth #FacesOfALS #SteveMarshalek #SDartmouth #ALSWarrior #FacesOfCourage #FacesOfStrength #May #EveryMonth #pALS #cALS #Courage #Strength #Honor your #ALShero #ALSangel #AnyTown #OneWithALSisTooMany #ThisIsWhyWereHere #EndALS

ALS AWARENESS MONTH's FACES OF ALS Gallery of Courage and Strength. Annette Weis of Yonkers, NY. Our incredible mother, aunt, and best friend, Annette Weis, passed from ALS in 2020 at the age of 57. She was a beautiful soul who loved cooking with her family, a sunny day at the beach, a glass of red wine and some Brett Eldredge! She was and always continues to be our rock. We love you and miss you so much. There isn’t a day that goes by that you aren’t remembered and honored. We live each day hoping to make you proud. Love you forever! ❤️ Your girls: Alexandra, Emily and Deanna . To submit a tribute about you or for your ALS hero, simply click: https://bit.ly/FOALS24. All tributes are submission-based, and we will honorably include all who would like to be featured. . #ALS #ALSawarenessMonth #FacesOfALS #AnnetteWeis #YonkersNY #ALSangel #FacesOfCourage #FacesOfStrength #May #EveryMonth #pALS #cALS #Courage #Strength #Honor your #ALShero #AnyTown #OneWithALSisTooMany #ThisIsWhyWereHere #EndALS

ALS AWARENESS MONTH's FACES OF ALS Gallery of Courage and Strength. Sunny Brous, age 37, from Hico, TX. Living with ALS for 9 years. I made it my mission to make sure others know that they’re not alone in this fight and, day by day, I’m going to put as much love into this community as possible. I’m just trying to live unapologetically. My name is Sunny 🌻 . To submit a tribute about you or for your ALS hero, simply click: https://bit.ly/FOALS24. All tributes are submission-based and we will honorably include all who would like to be featured. . #ALS #ALSawarenessMonth #FacesOfALS #Sunny #SunnyBrous #SunnyStrong #HicoTX #FacesOfCourage #FacesOfStrength #May #EveryMonth #pALS #cALS #Courage #Strength #Honor your #ALShero #ALSangel #AnyTown #OneWithALSisTooMany #ThisIsWhyWereHere #EndALS

Please join us Thursday, May 9th at 5:00 pm EST for our weekly Healey ALS Platform Trial update webinar with hosts Merit Cudkowicz, MD, MSc, and Sabrina Paganoni, MD, PhD of the Healey Center for ALS at Mass General Department of Neurology, and founding and lead Platform Trial investigators. This week, they will be joined by guest speakers Shawn Sarbacker of TechVsALS and Hristelina Ilieva, MD, PhD of Thomas Jefferson University to discuss Expanded Access and EAP's. As always, the webinar is free and all are welcome. Register 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: healeyalsplatform@mgh.harvard.edu. #ALS #PlatformTrial #HealeyHope #ALSONE #Unity

ALS AWARENESS MONTH's FACES OF ALS Gallery of Courage and Strength. Jack Dunderdale of Taunton, MA. Lost to ALS in 2018 at age 74. . "My hero & amazing dad Jack Dunderdale, the man with the best smile became my angel on 11/5/18 after his battle with ALS. Jack was a proud Marine, a marathon runner, loved sports, the beach and good music. . Dad, I love & miss you so much. Thank you for being my best friend & formalways being there for me. I hope I continue to make you proud." . 💚 Kristen . . To submit a tribute for your ALS hero, simply click: https://bit.ly/FOALS24. All tributes are submission-based and we will honorably include all who would like to be featured. . #ALS #ALSawarenessMonth #FacesOfALS #JackDunderdale #TauntonMA #FacesOfCourage #FacesOfStrength #May #EveryMonth #pALS #cALS #Courage #Strength #Heroes #Angels #ALShero #ALSangel #Loved #NeverForgotten #AnyTown #OneWithALSisTooMany #ThisIsWhyWereHere #EndALS

The 1st Annual ALS MA Advocacy Day in Massachusetts, held this past Thursday at the State House, was a beacon of hope and a profound example of unity, where individuals, families, advocates, healthcare professionals, and policymakers gathered to emphasize the overwhelming need for change to help make the world of ALS a better place for all impacted. We are immeasurably grateful to all who came out to support this important day. Through heartfelt conversations, storytelling, and a shared commitment to advocacy, attendees infused the day with optimism and resilience. Together, we envisioned, and committed to, a future where research flourishes, holistic and innovative healthcare services are accessible to all, and state policies reflect the needs of individuals living with ALS and all rare diseases. We were all inspired by how, in the face of such immeasurable challenges, everyone’s collective hope remained unwavering, illuminating the path forward toward a world where the burdens of ALS are eased, and one day, gone for good. The photos truly tell the story and we are so grateful to Jeff Turner of Black Thumb Studio, for donating his time and talent to capture such special moments from this very important day. To view all of the photos, click: https://lnkd.in/ex5Dgn6z The day may be over, but our work is not done, and we will go forth on it in unity. #ALS #ALSawarenessMonth #ALSadvocacy #ALSadvocacyDay #MAStateHouse #StateHouse #Massachusetts #ALSResearch #ALSCare #ALSQaulityOfLife #EndALS

In this week’s edition of our #ALS Research Symposium’s “First 5” Spotlight Series, we are so pleased to showcase Dr. Peter Vanderklish, PhD’s talk entitled, “SPG302: a first-in-class synaptic regenerative therapy for ALS.” Dr. Vanderklish is the Chief Scientific Officer at Spinogenix, Inc. and his talk, highlighting his work focused on regenerating glutamatergic synapses, was presented during our 2023 Symposium’s Industry Day on November 17th in the afternoon segment which was moderated by Dr. Robert Brown MD, DPhil, Director of the Day Neuromuscular Research Laboratory at the UMass Chan Medical School, and one of our esteemed partners within ALS ONE. To view Dr. Vanderklish’s 20-minute presentation in its entirety after watching the “First 5” minutes, you’ll find it on our website’s research tab at: https://lnkd.in/eM8khWQC Stay tuned each Friday for another installment of the “First 5” Symposium Speaker Spotlight Series and save the date for this year’s Symposium, which will be held November 13, 14, & 15th across the globe via @Zoom. . #ALS #Research #Amplify #Learning #SpotlightSeries #Unity #ALSONEResearchSymposium # PeterVanderklish #Spinogenix #TDP43 # SPG302 #Trailblazer #ALSResearchHeroes #UnlockingALS # RegenerativeTherapy #EndALS