Dr. Shefner says he accepted the new position because of the strength of Barrow’s neurosurgery department, the opportunities to grow its neurology department and, perhaps most important of all, its emerging ALS center of excellence, the Gregory W. Fulton ALS and Neuromuscular Disorders Center. Arizona’s sunny skies and ample hiking opportunities were also draws, he says. “It just seemed like the right time and the right opportunity.”
For Barrow, Dr. Shefner offers a rare combination of administrative acumen and clinical research expertise, says Robert Bowser, PhD, the director of research at the Fulton ALS Center. Dr. Bowser, who has known Dr. Shefner professionally for years and helped recruit him, says, “He has a wealth of knowledge about ALS and knows how to make a neurology department successful. Given his administrative experience, his ALS expertise and what we’re trying to do here, he is the perfect fit.”
Winner of the Sheila Essey Award
Dr. Shefner’s impact was recognized last year when he won the Sheila Essey Award for ALS Research from the American Academy of Neurology and The ALS Association.
Lucy Bruijn, PhD, MBA, chief scientist at The ALS Association, offers high praise for Dr. Shefner. “Dr. Jeremy Shefner is a leader in ALS clinical research, and his contributions to the field both in clinical trial design and biomarker development have been extraordinary,” she says.
Dr. Shefner received a PhD in sensory physiology from the University of Illinois and a medical degree from Northwestern University Medical School. He was in residency at the Harvard Longwood Neurology Training Program in the early 1990s when he first encountered patients with ALS.
“I thought the disease was very compelling,” he says, “The patients were just wonderful people, and it was a disease that clearly was not adequately treated.”
It was also during those residency years that Dr. Shefner was involved in his first ALS clinical trial and that he came to realize there was much doctors could do “to improve patients’ quality of life and their ability to face the future,” even without effective treatments.
World’s largest ALS research group
In 1996, Dr. Shefner co-founded what was initially called the New England ALS Research Consortium, a group of seven ALS clinics that joined together to run clinical trials on promising new ALS medications. A few years later— with a growing number of members from outside of New England—the group changed its name to the North East ALS Clinical Trials Consortium (NEALS).
Today, NEALS includes more than 120 sites and could more appropriately be called the “Nearly Everywhere” ALS Clinical Trials Consortium, jokes Dr. Bowser. “It is the largest consortium of ALS clinics in the world, and it’s involved in almost every ALS clinical trial in this country,” he says.
While the search for effective drugs has been challenging, ALS researchers know a great deal more about the disease than they did 20 years ago, Dr. Shefner says. “We’ve learned a tremendous amount about the disease, about the underlying processes that occur in the brain when people get ALS, about the genetics of ALS. I think that with every trial we learn more, and we get closer to finding something that actually will be effective for people with this disease.”
That is why clinical research is so near and dear to this physician-scientist’s heart and why expanding Barrow’s clinical research program is high on his to-do list. “I want to grow the clinical research program at Barrow,” he says. “That means building infrastructure, encouraging faculty to participate and hiring people with a commitment to clinical research.”
Dr. Shefner is excited about the opportunity to work more closely with Dr. Bowser and ALS specialist Shafeeq Ladha, MD, at the Fulton ALS Center.
“My goal for the ALS program is to help them grow,” he says. “I’d like us to be a national center for ALS research. I think we’re close to that already.”
Dr. Bowser says that adding Dr. Shefner to the Fulton ALS Center team has already turned some heads in the ALS world. Colleagues from other centers have told him, “Wow, you guys have really built a powerhouse in ALS. When are you going to recruit me?”
But the real goal, say all three ALS specialists, is to improve care for patients. “We want our patients to be at the forefront of ALS treatment, with access to the latest clinical trials and treatments,” says Dr. Bowser.
The bigger picture
Dr. Shefner’s position as associate director of Barrow is a new one at the institute, reflecting “the importance that neurology plays in the institute,” he says.
In that larger role, Dr. Shefner will focus on growing the Department of Neurology and expanding clinical trials throughout the institute. “There are many areas where targeted growth would be helpful,” he says.
Philanthropy will play a vital role, particularly when it comes to establishing the endowments needed to recruit and retain leading physicians and researchers.
“In today’s world, there’s tremendous pressure to see more patients, and the reimbursement per patient is going down. So if you want a physician- scientist to set up a research program that’s not directly reimbursable, you have to be able to pay them, and one really good model is with endowments,” Dr. Shefner explains.
“My hope for philanthropy in the next few years is to build a core of endowed professorships that we can use to entice world-class clinician- scientists to Barrow.”