Muscle Memory
Newsletter of the ALS Performance Research Foundation
October 2025
Renewal and Growth: Message from the CEO
By Thomas Lehrich, CEO
This is a time of renewal, growth, and collaboration for the ALS Performance Research Foundation. Our expanded partnerships with Cedars-Sinai Medical Center and Georgetown-MedStar’s Health Institute, along with Garmin’s in-kind donation of watches and API interface software, will allow us to collect a greater volume of data from our exercise study and analyze it more efficiently. These advancements bring us closer to identifying critical trends that can transform outcomes for those living with ALS.
In October, we look forward to meeting with our Board of Directors for our quarterly board meeting to chart the path ahead and expand our reach and commitment. Together, with our partners, supporters, and community, we are building the foundation for breakthroughs that once felt out of reach.
Thank you for joining us in this mission. Let’s take this journey together, with the belief that the next breakthrough is within reach
Science Spotlight
By Robert Palmer, Science Officer
GARMIN
ALS Performance Research Foundation deepened its collaboration with Garmin through an expanded in-kind donation to accelerate our exercise study. During meetings with Garmin’s staff, who had previously generously donated wearable devices, strengthen their commitment by donating granting the Foundation access to their API interface software.
The Garmin watches allow us to capture high-resolution performance data directly from study participants living with ALS, while the donated API interface makes it easier for our research team to analyze patterns in electronic spikes and other physiological signals. These insights are critical to identifying meaningful trends that may inform future interventions and improve quality of life for individuals with neuromuscular diseases.
Garmin’s expanded commitment underscores their dedication to advancing our research and reflects shared values of innovation, resilience, and empowering people to reach beyond their limits.
Study Highlights – New Partnership with MedStar Health Institute
By Thomas Lehrich, CEO
The ALS Performance Research Foundation is proud to announce the CEO is working with the MedStar Health Institute in Washington, DC. Established over the summer, this collaboration brings together our Foundation’s interest in biomarkers and exploration in data-driven research with the MedStar Endocrine Team’s advanced work in clinical care and research.
“This is a significant step forward for the Foundation,” said the CEO, Tom Lehrich. “By joining forces with MedStar Health Institute, we are expanding the scope and speed of our capabilities research. Together, we can generate new knowledge that will accelerate understanding and treatment of neuromuscular disorders
Nonprofit Milestones –
Meet the Board Members and Scientific Advisory Board Members Contributing to Our Success
By: Tom Lehrich, CEO
Mac Acabado, Member, Board of Directors
Mac Acabado earned her BA in English and Peace Studies from the University of Notre Dame and an MPA from the University of Washington. She is Regional Board Director At-Large for the International Network of Asian Pacific Islander Public Administrators (I-NAPA) Washington State Chapter and currently serves as a Management and Budget Analyst for the City of Tacoma, leading participatory budgeting initiatives. Outside of work, Mac enjoys outdoor adventures, reading, playing music, cooking, and puzzles.
Joanne Kelsey, Member, Board of Directors
Joanne Kelsey holds a BS in Agricultural Economics from Cornell University and a JD from Boston College Law School. She is Director of Legal Services at Lutheran Social Services of the National Capital Area and brings extensive experience in immigration and refugee law through leadership roles with the UNHCR, Women’s Refugee Commission, and U.S. Department of Justice. Joanne began her career as a Senate fellow, where she gained valuable experience in public policy and legislative processes.
Dr. Frank Conidi, Scientific Advisory Board Member
Dr. Frank Conidi is a Boston-trained, board-certified sports neurologist and headache specialist with extensive expertise in chronic and refractory headache disorders, concussion, and sports-related neurological conditions. He is the Director of the Florida Center for Headache and Sports Neurology, a tertiary referral center for complex cases. Dr. Conidi earned his medical degrees from Boston University, Boston University School of Medicine, and Southeastern University College of Medicine, completing his internship at Tufts University’s St. Elizabeth’s Medical Center and residency at Boston University Medical Center. He also received advanced training in headache medicine at Harvard-affiliated Massachusetts General and Brigham and Women’s Hospitals.
Dr. Rafaat W. Girgis, Scientific Advisory Board Member
Dr. Rafaat W. Girgis is an Assistant Professor of Psychiatry, Addiction Medicine, and Psychosomatic Medicine at Loma Linda University School of Medicine. He completed post-doctoral training in the United Kingdom and holds three American Board certifications in General Psychiatry, Addiction Medicine, and Psychosomatic Medicine. With a diverse background spanning internal medicine, ENT surgery, neurology, and psychiatry, Dr. Girgis brings extensive expertise in treating complex medical and psychiatric illnesses in both academic and community settings. In addition to his clinical and academic work, he serves on nonprofit boards supporting global medical relief, hosts an international television program on health education, and co-authored The Broken Chains, a book on the impact of childhood trauma.
Community Highlights & ALS in the News
By: Kathleen Regan Mills
The strength of our community remains central to everything we do. It is through your knowledge, support, and commitment that we continue to advance ALS research.
A plasma proteomics-based candidate biomarker panel predictive of amyotrophic lateral sclerosis — Nature Medicine — Aug 19, 2025 - Large multi-site work reports a blood-based proteomic signature that can distinguish people who will later develop ALS—potentially years before symptom onset. The authors propose the panel as a foundation for earlier diagnosis and trial enrichment. (PubMed)
Study using stem cells created from ALS patients identifies potential new target for treatment — Case Western Reserve University Newsroom (covers peer-reviewed paper above) — Aug 5, 2025 - Institutional summary of the EMBO Molecular Medicine paper (Item #2), emphasizing reversal of stress-related neuronal dysfunction via ISR inhibition in VAPB-mutant ALS8 models and the prospects for genetically informed trials. (Case Western Reserve University)
USU Scientists Play Key Role in Developing Breakthrough Blood Test for Early ALS Detection — Uniformed Services University News — Sept 16, 2025 (summarizes an Aug 19, 2025 Nature Medicine paper) - Press write-up of the Nature Medicine study (Item #1), underscoring that a plasma proteomics model predicted ALS years before clinical onset with high accuracy and detailing USU’s TAGC contributions. Helpful for context and author affiliations. (USU News)
Your Support Matters
Contribute today! As we move forward in our research and exploration of ALS treatments, your support plays a pivotal role in our success. Early donors have helped launch the Foundation, and their contributions continue to make a tangible difference in our work.
We encourage you to make a donation today. A tax-deductible gift to the ALS Performance Research Foundation is an investment in groundbreaking science with the potential to transform the lives of those affected by ALS.
To donate and to learn more about our mission, visit our website or contact us directly.
Foundation EIN: 99-4285539
Join our Advisory Committee! Are you passionate about ALS research? Do you have expertise in science or medicine? Join our Advisory Committee and be part of a team dedicated to making a real difference in the fight against neuromuscular diseases. Together, we can unlock the mysteries of ALS and shape a future filled with hope.
For more information, contact us at info@alsperformance.org.
Thank you for being part of the ALS Performance Research Foundation community. We look forward to keeping you informed as we continue to advance our journey toward groundbreaking solutions, new breakthroughs, and renewed hope for those impacted by ALS.
With gratitude,
Thomas Lehrich
CEO, ALS Performance Research Foundation
Muscle Memory is published quarterly by the ALS Performance Research Foundation. All rights reserved. Copyright 2025
Muscle Memory
Newsletter of the ALS Performance Research Foundation July 2025
Stronger Every Step: Message from the CEO
By Thomas Lehrich, CEO
These are exciting times for the ALS Performance Research Foundation as we continue to grow and advance our mission. This July, we proudly welcomed Joanne Kelsey to our Board of Directors. Joanne brings deep expertise in public policy and has a strong track record of building impactful partnerships with government organizations—an asset to our expanding work
We are pleased to share that we entered into a research partnership with Cedars-Sinai Medical Center. We will move forward in our study this fall focusing on identifying patterns in different stages of the disease. . As our research efforts grow, so does our team. We recently welcomed Kathleen Regan Mills as our Academic Internship Program Manager. Kathleen brings over two decades of experience designing and leading immersive academic internship programs through her work at The Washington Center. Since joining us, she has been busy developing a robust internship program that will allow students to work alongside medical professionals, researchers, and foundation staff to contribute meaningfully to our mission. Thank you for joining us in this mission. Let’s take this journey together, with the belief that the next breakthrough is within reach.
Science Spotlight
The Foundation is proud in building our collaboration with Garmin, a global leader in GPS and wearable fitness technology. Garmin’s advanced performance tracking tools will be integrated into the Foundation’s research to support individuals with neuromuscular conditions. “We are thrilled to leverage Garmin’s tools for training, tracking, and performance analysis,” said Thomas Lehrich, CEO of the Foundation. “This collaboration will help us unlock new data and improve outcomes for those living with neuromuscular diseases,” added the Foundation’s Chief Science Officer. Garmin is known for creating technology that empowers people to stay active, perform at their best, and push beyond limits—values that align closely with the Foundation’s human performance mission.
The Foundation is partnering with Cedars-Sinai Medical Center on a clinical study utilizing the Foundation’s EMG protocols. We are thrilled to collaborate with Cedars-Sinai and Dr. Vern Williams, head of the hospital’s Sports Neurology Group, to advance research in neuromuscular performance. We invite physicians and researchers interested in the intersection of pioneering treatments and neuromuscular diseases to consider joining our Advisory Committee. We seek passionate professionals eager to collaborate on projects in fields such as biophysics, cellular electrophysiology, and biomechanics. This is a unique opportunity to help shape the future.
Study Highlights
This fall, we’re expanding our commitment to ALS research through the launch of our internship program. We’re thrilled to begin mentoring the next generation of researchers. Interns will assist in a major medical research project. They will work with medical researchers, doctors, and patients with ALS. They will learn how to communicate in a team environment, how to communicate with patients, and the importance of properly tracking data. Interns will learn how to set up and attach an electromyography machine to patients with degenerative neurological disorders. Interns will measure the FP spikes prior, during, and after to exercise activity. Interns will learn how to track, organize, analyze and present medical findings. The fall semester deadline is August 8, 2025, application received after the deadline will be consider on a rolling basis. Help us spread the word! If you know a talented student in graduate school or entering their junior or senior year, please encourage them to apply. To learn more about our internship program and the application requirements
Nonprofit Milestones
By: Dr. Frank Condi
We’re excited to share several key developments at the ALS Performance Research Foundation. Our 990-N e-postcard has been successfully filed and accepted by the IRS. This marks an important milestone in our growth, and we look forward to using it to build trust and transparency with new potential donors. In July, we welcomed Joanne Kelsey to our Board and discussed the scope of our partnership with Garmin. Board members were also tasked with helping to expand our Science Advisory Board by conducting strategic outreach.
Community Highlights
By: Kathleen Regan Mills
The strength of our community remains central to everything we do. It is through your knowledge, support, and commitment that we continue to advance ALS research.
• The Role of Skeletal Muscle in Amyotrophic Lateral Sclerosis: State of the Art 2025 The comprehensive review shows that in ALS, muscle fibers and their stem cells (satellite cells) struggle to heal and regenerate, suggesting that muscles aren’t just passive victims of nerve loss—they actively contribute to disease progression.
• Case Report: ALS Type 6 with FUS Gene Variant and Limb Muscle Atrophy This report describes a middle-aged patient with a specific genetic mutation (FUS) who began having ALS symptoms in one arm. It adds to evidence that certain genes can cause muscle weakness even before widespread nerve damage occurs.
• Assessment of Cervical Skeletal Muscle Index in Early and Late Phases of Amyotrophic Lateral Sclerosis By using MRI to measure neck muscle size over time, researchers found that patients more than six months into ALS showed noticeably reduced neck muscle volume—indicating that neck muscle loss could be an early warning sign.
Your Support Matters
Contribute today! As we move forward in our research and exploration of ALS treatments, your support plays a pivotal role in our success. Early donors have helped launch the Foundation, and their contributions continue to make a tangible difference in our work. We encourage you to make a donation today. A tax-deductible gift to the ALS Performance Research Foundation is an investment in groundbreaking science with the potential to transform the lives of those affected by ALS. To donate and to learn more about our mission, visit our website or contact us directly. Foundation EIN: 99-4285539
Join our Advisory Committee!
Are you passionate about ALS research? Do you have expertise in science or medicine? Join our Advisory Committee and be part of a team dedicated to making a real difference in the fight against neuromuscular diseases. Together, we can unlock the mysteries of ALS and shape a future filled with hope. For more information, contact us at info@alsperformance.org. Thank you for being part of the ALS Performance Research Foundation community. We look forward to keeping you informed as we continue to advance our journey toward groundbreaking solutions, new breakthroughs, and renewed hope for those impacted by ALS.
With gratitude,
Thomas Lehrich CEO, ALS Performance Research Foundation
Muscle Memory is published quarterly by the ALS Performance Research Foundation. All rights reserved. Copyright 2025