The ALS Association

ALS Ice Bucket Challenge Progress
Carrie Munk
The ALS Association
(571) 319-3047



American Academy of Neurology and The ALS Association Announce 2014 Sheila Essey Award Recipient

Jeremy Shefner, M.D., Ph.D. to Receive Distinguished ALS Research Award

Washington, D.C. (April 28, 2014) — The 2014 Sheila Essey Award for ALS Research recipient is Jeremy Shefner, M.D., Ph.D., who has served as a principal investigator of numerous trials for amyotrophic lateral sclerosis (ALS) and whose leadership in clinical research has been instrumental in accelerating the pace and improving the quality of clinical trials for the disease. Dr. Shefner will receive this award on May 1 at the American Academy of Neurology (AAN) Conference’s annual meeting in Philadelphia. Pa.

ALS, otherwise known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects neurons (nerve cells) in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. There is no cure and no life-prolonging treatments for the disease. 

Each year, since 1996, The ALS Association and the AAN present this prestigious award to honor and acknowledge an individual who is making significant contributions in research for the cause, treatment, prevention, or cure for ALS. The award is made possible through the generosity of the Essey Family Fund, in memory of Sheila Essey, who battled ALS for 10 years and died from the disease in 2004. Past recipients have used the funds to continue ALS research or to support promising young scientists on their research teams.

“We are very excited to recognize Dr. Shefner’s tremendous contributions and are delighted that he is this year’s recipient of the Sheila Essey Award,” said Lucie Bruijn, Ph.D., M.B.A., Chief Scientist at The ALS Association.

“I am greatly honored to be this year’s Sheila Essey award recipient and appreciate the roles that Mr. Essey, the AAN, and The ALS Association have played in supporting ALS research," said Dr. Shefner. “The ALS Association has been an active partner in promoting clinical research in ALS and has funded much of the work that has led to my receiving this award.”

Dr. Shefner has been the principal investigator of numerous ALS trials, most recently leading a multinational, double-blind Phase II trial involving the use of the skeletal muscle activator for Cytokinetics’ drug tirasemtiv. Tirasemtiv increases muscle sensitivity to calcium release. In initial trials, this drug’s function involved increasing muscle force, potentially aiding activities of daily living for people with ALS.

Earlier in his career, Dr. Shefner developed expertise in electrodiagnostic medicine and used that knowledge to develop motor unit number estimate (MUNE) as an objective biomarker to track ALS disease progression. MUNE is now used in several ALS clinical trials, and the techniques he developed have become standard for its application in the field.

In 1995, Dr. Shefner co-founded the Northeast ALS Clinical Trials Consortium (NEALS) along with Merit Cudkowicz, M.D., M.Sc., to coordinate ALS clinical trials among nine centers in the northeastern United States. Today, NEALS includes more than 100 member sites across North America and elsewhere. In recognition of the vital work done by NEALS, The Association’s Translational Research Advancing Therapy for ALS (TREAT ALS™) program has provided support for its programs for the past six years.

Dr. Shefner earned his Ph.D. in psychology from the University of Illinois and his M.D. from Northwestern University. He is now Professor and Chair of Neurology at SUNY Upstate Medical University in Syracuse, New York, where he continues an active clinical practice. He has been a member of the AAN since 1989 and has authored more than 100 research publications.

About The ALS Association
The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front.  By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.  For more information about The ALS Association, visit our website at

Powered by Blackbaud
nonprofit software