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