Research – ALS ONE

Optimizing Collaboration

In the past, ALS research has been fractured and duplicative with researchers working in silos—that environment creates a breeding ground for redundancy and inefficiency

The ALS ONE partnership unites leading ALS experts from a wide array of leading institutions as one team working toward a common goal. These stakeholders regularly communicate, share data, discuss findings, and establish best practices. This partnership improves coordination among research, care, and treatment teams, ultimately reducing the duplication of efforts.

The unprecedented linking of minds and resources from Massachusetts General Hospital (MGH), University of Massachusetts Medical Center, ALS Therapy Development Institute (ALS TDI), and Compassionate Care ALS (CCALS) is unique for its leadership in efficiency, dedication to innovative research, and commitment to increasing access to care and treatment.

From The Healey ALS Platform Trial at MGH, the very first ever of it’s kind, ALS TDI’s AT-1501 (Anti-CD40-Ligand Antibody) trial, to the anti-sense oligonucleotide (ASO) trial to target the C9orf72 gene under the direction of Dr. Brown at UMass Memorial; among many others, you can feel confident that your donations are impacting cutting edge and promising collaborative research. Meet our team

Bridging the gap between the ALS community and the brilliant minds behind pivotal ALS research publications.

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 NEALS on this dynamic new series, and we invite you to watch the inaugural review, where we delve into the publication entitled, which was aired on May 14th at 4 pm EST via Zoom.

REVIEW 1: “Incorporating Genetic Testing into the Care of Patients with Amyotrophic Lateral Sclerosis/Frontotemporal Degeneration Spectrum Disorders”.

Our first review, aired on May 14, 2024, spotlights 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 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 NEALS Research Ambassador and International Patient Fellow.

We also invite you to read the publication, “Incorporating Genetic Testing into the Care of Patients with Amyotrophic Lateral Sclerosis/Frontotemporal Degeneration Spectrum Disorders,” in its entirety, by going to: https://bit.ly/IGTICOPALS.

REVIEW 2: “Evidence-based consensus guidelines for ALS genetic testing and counseling”.

Our 2nd review of our first series under ALS Genetic Testing and Counseling, was aired on June 11, 2024, spotlighting the publication entitled, “Evidence-based consensus guidelines for ALS genetic testing and counseling”, with two of its authors, Dr. Matthew Harms, MD, Associate Professor of Neurology at Columbia, and Jennifer Roggenbuck, MS, CGC, Genetic Counselor and Assoc Prof of Neurology at Ohio State Wexner Med Ctr. Panelists for this webinar included Dr. Christina Fournier, MD, MSc, Associate Professor of Neurology at Emory Univ. & NEALS NICE Committee member; Lori Andre, who is a NEALS Research Ambassador & Patient Advisory Council Member; Paula Trefiak, a NEALS Research Ambassador and International Patient Fellow, along with our Executive Director, Jennifer DiMartino.

We also invite you to read the publication in its entirety, by clicking HERE.

REVIEW 3: “Longitudinal Biomarkers in Amyotrophic Lateral Sclerosis.”

Our 1st review of two under the umbrella of ALS Biomarkers, aired on August 27, 2024, spotlighting the publication entitled, “Longitudinal Biomarkers in Amyotrophic Lateral Sclerosis.” We were honored to be joined by two of the authors, Dr. James Berry, MD, MPH, Director of the MGH ALS clinic and Chief of the Division of ALS & MND at MGH, and Dr. Robert Bowser, PhD, Chief Scientific Officer at Barrow Neurological Institute. Joining our Executive Director, Jennifer DiMartino on the panel for this review, is Dr. Stephen Johnson, Neurologist at Mayo Clinic & NEALS NICE Committee Member. Jean Swidler, Founder & Exec. Dir of End the Legacy, and NEALS Research Ambassador; and Lori Larson Heller, NEALS Research Ambassador & PAC Member. We hope you enjoy the webinar and we thank all who so generously participated to help the ALS community.

We also invite you to read the publication in its entirety, by clicking HERE.

Our 6th Annual ALS ONE Research Symposium was held on November 16, 17 and 20, 2023. Hosted along with our research team: Dr’s Merit Cudkowicz, MD, MSc of MGH, Robert Brown, MD, DPhil of UMass Medical School, James Berry, MD, MPH of MGH, and Fernando Vieira, MD of ALS TDI, and held virtually – enabling attendees from 36 countries to attend with ease, our Symposium was an overwhelming success. The conference had over 890 registered guests, including researchers, scientists, and members of the ALS community from around the world, convening virtually for three days to share outcomes and discoveries of critical research that is underway across the globe to help uncover therapeutic options leading to an ultimate cure for Amyotrophic Lateral Sclerosis (ALS). Please click HERE to view the official digital Symposium Speaker and Sponsor Guide. Recordings were made of the presentations which we were permitted to share and they are listed and linked below.

DAY 1: November 16, 2023 – Keynote Speakers

Symposium Segment: Day 1, 11/16/23: Keynote Speakers

Presentation Title: Opening Remarks by ALS ONE Executive Director Jennifer DiMartino, with special guest, Brooke Eby on her inspiring journey with ALS since being diagnosed at age 33.

Moderated by Dr. James Berry, MD, MPH, of The Healey and AMG Center for ALS at MGH.