ALS Association fears ‘instability’ with removal of NINDS director
Group asks Congress for 'clarification' from Trump administration, NIH
- The ALS Association fears instability at NINDS due to the removal of its director, Walter J. Koroshetz, MD.
- The leadership void risks slowing scientific progress for ALS research.
- About half of the NIH's 27 institutes and centers are being led by interim directors with Koroshetz's departure.
The ALS Association is urging members of Congress to take action to address issues with instability in leadership at the National Institutes of Health (NIH).
At issue is the Trump administration’s decision not to renew the contract of Walter J. Koroshetz, MD, the director of the National Institute of Neurological Disorders and Stroke (NINDS), according to a press release from the ALS Association. NINDS is a branch of the NIH that focuses on neurological diseases such as amyotrophic lateral sclerosis (ALS).
In a letter to the Congressional ALS Caucus — a bipartisan group of lawmakers with an interest in creating policies that improve the lives of people with ALS — the association stated that the decision not to renew Koroshetz’s contract was made “without advance notice, stakeholder consultation, or a clear succession plan.”
Disruptions slow ‘scientific progress’
The letter, signed by Melanie Lendnal, the ALS Association’s senior vice president of policy and advocacy, notes that Koroshetz “is widely regarded by neurologists, researchers, and patient advocates as a steady, trusted, and visionary leader,” and said his tenure “has been marked by significant advances in neurological research, a strong commitment to evidence-based medicine, and a consistent willingness to engage transparently with clinicians, researchers, and patient communities, including those affected by ALS.”
The decision to remove Koroshetz appears to have been made without consulting any of the major stakeholders or patient communities that rely on NINDS to support life-saving research, the association maintains, noting also the absence of a public plan about who is going to lead to NINDS now.
The letter notes that with Koroshetz’s departure, about half of the NIH’s 27 institutes and centers are being led by interim directors under the Trump administration.
“For the ALS community, this level of leadership instability is particularly troubling,” the letter states, noting that “disruptions in leadership risk slowing scientific progress, weakening coordination across federal initiatives, and undermining confidence at a moment when urgency and stability are essential.”
The ALS Association has asked members of the Congressional ALS Caucus to immediately seek clarification from the administration and NIH about why Koroshetz was removed, and to ensure there is a plan in place to ensure the NINDS has stable, competent leadership. The association also urges lawmakers to consult with neurology experts and patient communities as these decisions are being made.
“The millions of Americans living with ALS and other neurological diseases depend on strong, experienced stewardship of the nation’s neurological research enterprise,” the letter concludes. “We would welcome the opportunity to provide additional context or engage further on why continuity and evidence-driven leadership at NINDS are so critical to patients and families.”
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