In 2023, Layne Oliff, PharmD, took on a vital role as a PALS (person living with ALS) advisor to the NEALS Executive Committee, offering a perspective that bridges the gap between the research community and those living with ALS. As a non-voting member, Layne has used his two-year term to influence decision-making, ensuring that the voices of people living with ALS are woven into the very fabric of NEALS’ initiatives. With his term coming to a close in 2025, Layne’s contributions have had a lasting impact on the direction of the consortium’s work.
To hear Layne share his thoughts on the importance of advocacy and getting involved, we encourage you to view this video created in partnership with Your ALS Guide.
“Layne has been truly a model for showing us what it is to live with this disease—facing it with humility, strength, grace, and urgency,” says Dr. James Berry, Co-Chair of the NEALS. “He’s brought that perspective to us in a way that I personally can’t thank him enough for. Layne keeps us on track, broadens our efforts while staying in line with our mission, and always challenges us to reflect on what the next NEALS effort needs to be to achieve our goals.”
Layne attended the ALS Clinical Research Learning Institute® (CRLI) in 2021, and his background as an ALS Research Ambassador® made him an ideal fit for his advisory role with the NEALS Executive Committee. Since joining, he has contributed invaluable insights during numerous Scientific Advisory Board (SAB) meetings, where his unique ability to connect clinical research with the lived experiences of those with ALS has helped refine research priorities and ensure that people living with ALS remain central to clinical research, particularly in shaping clinical trial design and preclinical discussions.
“Layne, has had a profound impact on the guidance our committee provides companies exploring new therapeutics for ALS” adds Dr. Jeffrey Rothstein, Co-Chair of the NEALS Scientific Advisory Board. “The reflection of a patient, especially when considering modes of drug delivery, inclusion criteria, recruitment strategies, and many other aspects, have been very important. These reflections have helped guide companies and researchers as they work together to advance drugs for ALS.”
Layne has also played a key role in spearheading the ALS Organization Forum, which NEALS will host later this year. This forum will bring together ALS organizations from around the country to foster collaborative synergies and enhance communication, and under Layne's leadership, it is set to make a lasting impact on the ALS community.
“Layne’s pharmacology and industry background have been invaluable for us,” adds Dr. Jinsy Andrews, Co-Chair of the NEALS. “He has elevated the organization into a new era for drug development while supporting those living with ALS and caregiving for the disease. Layne has strengthened our partnerships with all stakeholders in the ALS community.”
In addition to his work with the forum, Layne has made significant contributions to agenda planning and logistical considerations for NEALS events. He has played a key role in the Annual NEALS Meeting planning and contracting process. His strategic input has ensured the successful alignment of logistical and financial needs with the organization's overarching goals. Furthermore, Layne has participated in countless ALS Clinical Research Learning Institutes as an ALS Research Ambassador Mentor.
Layne approached his role as the PALS advisor thoughtfully, knowing that it would be a significant responsibility. “When elected as the PALS advisor, I took the position with some caution because I wasn’t sure of my role. I should not have been concerned. Committee members encouraged me to participate and were very interested to learn more about the patient and caregiver perspective. From my experience, NEALS and its members promote and encourage participation from the entire ALS community.”
Layne’s contributions are a testament to the power of bringing together those with lived experience and the scientific community. His work continues to shape NEALS’ efforts, ensuring that the voices of people living with ALS remain at the heart of every decision made. | 