ALS ONE

We are thrilled to announce that the first segment of our ALS Publication Review Series will be aired on May 14th at 4pm EST. Our new initiative aims to help bridge the gap between the ALS community and the brilliant minds behind important ALS research publications, helping to provide and gain a broader and clearer understanding of the content therein. Our first review will spotlight the publication entitled, "Incorporating Genetic Testing into the Care of Patients with Amyotrophic Lateral Sclerosis/Frontotemporal Degeneration Spectrum Disorders," and we're honored to delve into it with two of its authors, Laynie Dratch, ScM, CGC, from the UPenn Neurogenetics Therapy Center, and Lauren Lichten, MS, CGC, from the Emory University School of Medicine ALS Clinic with us, along with our panel for this review, which includes Mandi Bailey from the NEALS Patient Advisory Council, Jennifer DiMartino, ALS ONE’s Executive Director, @Justin Kwan MD, Director of the Neurodegenerative Disorders Clinic at the National Institute of Neurological Disorders and Stroke (NINDS), and NEALS member, as well as David Shulman, who is a Northeast ALS Consortium (NEALS) Research Ambassador and International Patient Fellow. Registration for the webinar is free, and we hope you'll join us on May 14th at 4pm EST by clicking: https://lnkd.in/g2AXCx97. We also invite you to read the article ahead of time if you have yet to, by clicking: https://bit.ly/IGTICOPALS. . #ALS #ALSONE #NEALS #ALSONECommunityConnect #ALSPublicationReviewSeries #ALSPublication #GeneticTesting #ALSGeneticTesting #FamilialALS #FALS #ALSAuthors #ALSCommunity #EndALS

NEW DONOR$ NEEDED to help in the fight against ALS. We have an important campaign that starts today to commemorate ALS Awareness month. It’s a challenge that was set forth by a very inspiring man who is living with ALS and we’d love your help. He will match all donations up to $50,000 but 75% of the donations must come from NEW DONORS and no single donor’s gift can be over $1,000. We hope you’ll reach out to your network and inspire them to support our ALS research and care today. The ALS clock is ticking and there is no time to wait. We humbly ask you, if you care, please share. Donors can give their gift by clicking https://alsone.org/. (also link in bio). #ALS #ALSONE #ALSawarenessMonth #50K #MatchingGift #ALShero #ALSresearch #ALScare #NewDonorsNeeded to #Help #ENDALS #PleaseShare

We would love you to join us Thursday, May 2nd 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. Dr.'s Cudkowicz and Paganoni, will give the latest updates and answer questions from the audience. 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

SUBMIT YOUR TRIBUTE TO HONOR YOUR ALS HERO FOR ALS AWARENESS MONTH. Each day here and on https://lnkd.in/etexn6cm, https://lnkd.in/esDn2wfu, and https://lnkd.in/ebZg5gXe, throughout May, as we do each year to recognize ALS Awareness Month, we will be featuring some of the incredibly inspiring individuals who are currently living with ALS or who have lost their battle to the disease. All are welcome to participate from anywhere around the world. If you would like to submit a tribute for a loved one – or you are living with ALS and would like to be featured – it would be our utmost honor. Simply complete the form via the link below and upload 1-4 photos and we’ll post during May. These tributes are submission-based and it's our honor to include anyone and everyone who would like to be included. At ALS ONE, every month is ALS Awareness Month. We're here because of those currently living with the disease, their families, and the memory of those we've lost. They inspire us to continue our work until we've achieved our goal from ALS ONE to ALS DONE. Our FACES OF ALS Campaign has been a beloved feature during ALS Awareness Month since our founding in 2016. We are proud that this is our 9th year. To submit, simply click: https://bit.ly/FOALS24 We extend our collective hearts to you knowing that likely, because you are even reading this, you have been and therefore will always be, impacted by ALS. You are not alone. 💚💙 . #ALS #ALSONE #ALSawareness #ALSawarenessMonth #FacesOfALS #HonorYourALSHero #HonorYourALSangel #ShareYourALSstory #YouAreWhyWereHere #WereNotDoneUntilWereALSDONE

The 3rd Annual Shifstrong Home Run Derby will take place on June 1st this year and we couldn't be more grateful for Charlie Shifrin for spearheading this incredible event for us once again. Charlie lost his cherished dad, his absolute hero, Brian Shifrin, to ALS in 2019 at the age of 43 and has been so generously lending his time to hold this event each year so that other families don't suffer the same fate. We hope you'll join us on the Brian G. Shifrin Field at The Finn School, 60 Richards Road, Southborough, MA from 12:30-4pm to help Charlie knock ALS out of the park by swinging for the fences! All are welcome to participate! Brian loved nothing more than his family and the ballfield, so we’re positive that he'll be smiling down on June 1st and this heartwarming and fun family day. ⚾️ Softball and Baseball Divisional registrations are now open. ⚾️ SOFTBALL: High School @ 12:30pm & Adults @ 1:00pm.  ⚾️ BASEBALL: Ages 10U @ 1:30pm, 11-14 @ 2:00pm, High School. @ 2:45pm, Adults @ 3:30pm. ⚾️ The cost is $25 per participant, and the 1st 100 registered participants will receive a 2024 commemorative event ball cap.  ⚾️ To Register, go to https://lnkd.in/et7Tg2W2 ⚾️ #ALS #ALSONE #ShifstrongHomeRunDerby #BrianShifrin #Shifstrong #HomeRunDerby #SwingForTheFence #StrikeOutALS #EndALS

In this week’s edition of our #ALS Research Symposium’s “First 5” Spotlight Series, we’re honored to showcase Dr. Tamara Seredenina, PhD, who is the Group Leader of TDP-43/ Neuroinflammation at AC Immune in Lausanne, Switzerland. Dr. Seredenina provided an update on AC Immune’s TDP-43-targeting diagnostic candidates in her talks entitled “Development of fluid and PET imaging biomarkers for detection of TDP-43 pathology”, and “Discovery and optimization of the first-in-class TDP-43 PET tracer.” during our 2023 Symposium’s Industry Day on November 17th. The segment was moderated by Dr. Fernando Vieira, the CEO & CSO at ALS TDI, and one of our esteemed partners within ALS ONE. To view Dr. Seredenina’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 #TamaraSeredenina #ACImmune #TDP43 #PETtracer #Trailblazer #ALSResearchHeroes #UnlockingALS #Biomarkers #EndALS

Next Thursday, May 2nd! Join us for the 1st ANNUAL ALS ADVOCACY DAY in Massachusetts from 10:30am-1pm at the Massachusetts State House. We are proud to be partnering on the planning of this important event with Compassionate Care ALS, ALS TDI, Mass General Department of Neurology, The ALS Association of MA, and many people living with ALS and community members. The inaugural event is intentionally planned to align with the start of ALS Awareness Month to unite individuals living with ALS and their families, along with ALS organizations, advocates, clinicians, industry partners, and legislative champions from across the Commonwealth. Together, we aim not only to raise awareness about ALS but also to address the need for increased research funding and significant challenges faced by individuals living with the disease to help all achieve the best possible quality of life. We hope you'll register today and that you’ll share with your network to help make this important day as impactful as possible. https://lnkd.in/exxUHPmM . #ALS #ALSADVOCACY #MassachusettsALSADVOCACY #ALSADVOCACYDAYMA #ALSONE #MGH #ALSTDI #CCALS #ALSA #PALS #CALS #ALL #UNITE for #BetterCARE #Improved #QualityOfLife #MoreRESEARCHfunding #BrighterWORLD #ONEwithoutALS #TogetherToENDALS

We hope you'll join us Thursday, April 25th 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. Dr.'s Cudkowicz and Paganoni, will give the latest updates and answer questions from the audience. 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

In this week’s edition of our #ALS Research Symposium’s “First 5” Spotlight Series, we’re excited to showcase Dr. Katie Planey, PhD, MBA. Dr. Planey is the CEO of Acelot, Inc and her presentation, “Novel small molecule therapeutics for ALS reduce TDP43 and other amyloid related pathologies in vitro and in vivo by reducing cytoplasmic aggregates and increasing functional nuclear TDP43”, was given during our 2023 Symposium’s Industry Day on November 17th. The segment was moderated by Dr. Fernando Vieira, the CEO and CSO at ALS TDI, and one of our esteemed partners within ALS ONE.   To view Dr. Planey’s 20-minute in-depth 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 #KatiePlaney #Acelot #TDP43 #Trailblazer #ALSResearchHeroes #UnlockingALS #EndALS  

We're excited to announce a new resource initiative for the ALS community! Introducing our ALS Research Publication Review series, designed to connect the ALS community with the brilliant minds behind important ALS research publications. Each session will delve into a different publication, offering insights to foster a broader and clearer understanding of the content. We're proud to collaborate with Northeast ALS Consortium (NEALS) on this dynamic new series, and we invite you to mark your calendars for our inaugural review on May 14th at 4 pm EST via Zoom. Stay tuned for more details on Review #1 coming soon! . #ALS #ALSONE #NEALS #ALSONECommunityConnect #ALSPublicationReviewSeries #ALSPublication #ALSAuthors #ALSCommunity #EndALS