Sheila Essey Award Recipients | The ALS Association

Winners of the prestigious Sheila Essey Award have made significant contributions to ALS research. 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. 

2024  

Eva L. Feldman, M.D., Ph.D., University of Michigan 

Contributed to a deeper understanding of the underlying mechanisms of ALS, paving the way for the development of novel therapeutic approaches
Demonstrated that specific occupations and occupational exposures are linked to the onset and progression of ALS
Identified exposure to persistent organic pollutants, air pollutants, and metals as modifiable risk factors associated with ALS

2023  

Virginia M.Y. Lee, Ph.D., University of Pennsylvania 

Established how the buildup of misfolded protein in the brain contributes to the development of ALS and other neurodegenerative diseases 
Discovered the link between the TDP-43 protein and the development of frontotemporal dementia (FTD) and ALS
Demonstrated that cell-to-cell transmission of pathological TDP-43 causes ALS to progress, opening up new avenues of research to identify targets for drug discovery 
Has been dedicated to mentoring younger colleagues, which will continue to impact the field for generations to come

2022 

Matthew Kiernan, MBBS, Ph.D., DSc, FRACP, FAHMS, Brain and Mind Centre, University of Sydney, Australia 

Played a pivotal role in improving care and driving ALS research worldwide through his stewardship of the Pan-Asian Consortium for the Treatment of ALS
Established consensus guidelines for ALS that have helped simplified diagnosis and improve clinical trial enrollment
Developed important techniques that enable study of disruption of brain networking in ALS
Established new disease biomarkers and mechanisms of disease progression

2021 

Jan Veldink, M.D., Ph.D., University Medical Center Utrecht, The Netherlands 

Established a research line on ALS genetics, epidemiology and transcriptomics 
Established an international biobanking register and patient database specifically for ALS, which is essential to be able to carry out Project MinE

2020  

Guy Rouleau, M.D., Ph.D., McGill University, Canada 

Identified the super oxide dismutase (SOD1) gene 
Identified TARDBP as an ALS-linked gene – TDP-43, the protein made from this gene, has emerged as possibly the most important protein in sporadic ALS 
Identified FUS, providing a key RNA-binding protein alternative to TDP-43 
Identified the role of the hGle1 gene in ALS – the first time the nuclear pore was implicated in ALS

2019  

Aaron D. Gitler, Ph.D., Stanford University.  

Found a gene in yeast cells that could protect those cells from clumping TDP-43 proteins, which is thought to play a major role in ALS  
Developed a way to inhibit expression of C9orf72 transcripts with the potential of leading to therapeutic outcomes  
Found that mutations in the ataxin-2 gene were significantly associated with risk of ALS and that lowering levels of ataxin-2 in mice with antisense therapy can help mice with TDP-43 connected ALS live longer

2018  

Timothy Miller, M.D., Ph.D., Washington School of Medicine in St. Louis 

Instrumental in bringing antisense technology to clinical trials for people living with ALS  
Co-investigator for the SOD1 antisense clinical trials, along with developing relevant SOD1 biomarkers measured in cerebral spinal fluid and plasma  
Conducted important natural history studies for C9orf72 families, which were critical to inform C9orf72 antisense clinical trials  
Developed a biomarker important for tracking TDP-43, a protein found in almost all cases of ALS  
Identified that down regulation of microRNA (miR-155) in ALS mice could translate into a potential therapeutic target

2017  

John Ravits, M.D., University of California San Diego 

Revealed the pattern of ALS disease spread through the spinal cord and brain, which led to the seminal observation that disease spreading is consistent with transfer from cell to cell within the nervous system 
Helped pioneer antisense oligonucleotide therapy for the most common genetic form of ALS, C9orf72 
Served as principal investigator on many ALS clinical trials and as the director of the ALS Clinic at the University of California San Diego Health System, an ALS Association Certified Center of Excellence

2016  

Ammar Al-Chalabi, Ph.D., FRCP, DipStat, King’s College, London and King’s MND Care and Research Center 

Helped identify many known genetic causes of ALS, including C9orf72 
Developed the ALSoD database, an important tool for researchers funded by The ALS Association, MNDA UK and Therapy Alliance 
Made significant contributions to understanding disease staging

2015  

Robert Bowser, Ph.D., Barrow Neurological Institute 

Identified ALS biomarkers in the blood and cerebrospinal fluid  
Co-founded Knopp Biosciences and Iron Horse Diagnostics

2015  

Adriano Chio, M.D., F.A.A.N., University of Turin, Italy 

Established the Piedmont ALS registry to document genetic and environmental risks, progression and survival rates of people living with ALS 
First to describe the increased risk of ALS among Italian soccer players and the potential increased risk attributed to physical activity and traumas

2014  

Jeremy Shefner, M.D., Ph.D., Barrow Neurological Institute 

Developed an ALS biomarker to track ALS disease progression, called motor unit number estimate (MUNE)  
Co-founded the Northeast ALS Clinical Trials Consortium (NEALS) along with Merit Cudkowicz, M.D., to coordinate ALS clinical trial centers in northeastern U.S. 
Served as principal investigator of numerous clinical trials

2013  

Rosa Rademakers, Ph.D., Mayo Clinic, Jacksonville, FL 

Co-discovered the C9orf72 mutation, the most common genetic cause in ALS, from her study of a multigenerational family in North America

 2013 

Bryan Traynor, M.D., Ph.D., Laboratory of Neurogenetics, National Institute of Aging  

Co-discovered the C9orf72 mutation, the most common genetic cause in ALS, from his study of a Finnish population 
Discovered mutations in the VCP and MATR3 genes as causes of familial ALS 
Conducted the first genome-wide association study of ALS

2012  

Christopher Shaw, MBChB, M.D., FRACP, King’s College, London, UK 

Discovered TARDBP and FUS mutations as causes of familial ALS

2011  

Leonard van den Berg, M.D., Ph.D., University Medical Center, Utrecht, The Netherlands 

Founded the first integrated Netherlands ALS Center  
Completed population-based studies showing smoking to be a risk factor for ALS and that moderate alcohol consumption might be protective 
Initiated Project MiNE

2010  

Clive Svendsen, Ph.D., Cedars-Sinai Regenerative Medicine Institute, Cedars-Sinai Medical Center

Harnessed induced pluripotent stem cell (iPSC) technology using adult skin cells from people living with ALS and reprogrammed them to generate neuronal cell types, including motor neurons 
Helped develop surgical techniques used in stem cell trials  
Generated good manufacturing procedures and a clinical grade bank of human cells producing GDNF (growth factor)  
Established the iPSC core at Cedars-Sinai

2009  

Orla Hardiman, Ph.D., Trinity College Institute of Neuroscience, Dublin, Ireland 

Developed the longest running population-based ALS registry in the world 
Published a study showing that the frequency of ALS is not uniform around the world  
Linked a series of novel mutations in the gene angiogenin to some cases of ALS 
Showed that cognitive impairment in ALS occurs in about 40% of people and occurs early in the disease

2009  

Merit Cudkowicz, M.D., Harvard Medical School and Massachusetts General Hospital MDA ALS Clinic  

Co-founder and co-director of the NEALS Clinical Trials Network  
Investigator in numerous ALS clinical trials

2008  

Wim Robberecht, M.D., University Hospital Gasthuisberg, University of Leuven, Belgium 

Discovered disease-modifying genetic factors, such as the involvement of heat shock proteins and vascular endothelial growth factor (VEGF) in ALS, using genetic screening of zebrafish and fly models  
Established the role of excitotoxicity and calcium metabolism in motor neuron death in ALS

2007  

Christopher Henderson, Ph.D., Columbia University Medical Center, Motor Neuron Center and Columbia Stem Cell Initiative  

Pioneered the discovery of helper molecules called trophic factors that support the growth and health of motor neurons 
Helped describe the role of nitric oxide in programmed cell death 
Co-founded Trophos, which had a lead molecule successful in spinal muscle atrophy trial  
Served as vice president of neurology at Biogen

2006  

Peter Carmeliet, M.D., Ph.D., Center of Transgene Technology and Gene Therapy, University of Leuven, Belgium 

Discovered the role of VEGF in motor neuron disease

2005  

Michael Strong, M.D., FRCPC, Western University, Ontario, Canada  

Served as co-chair of the Canadian ALS Research Consortium  
Contributed to an understanding of the mechanisms by which intracellular deposits of protein (composed primarily of neurofilament) are formed and how these aggregates contribute to the disease process of ALS 
Demonstrated that cognitive changes in ALS are associated with alterations in the metabolism of tau protein

2004  

P. Nigel Leigh, M.B.B.S., Ph.D., F.R.C.P., FMedSCI, University of Sussex, UK 

Established a research program in Motor Neuron Disease at King’s College London – the King’s MND Care and Research Center was the first center in the UK funded by the MNDA and is a model for multi-disciplinary care worldwide.  
Made significant contributions to imaging techniques for ALS 
Contributed to the development of riluzole, the first FDA-approved drug to treat ALS

2003  

Stanley Appel, M.D., Institute for Academic Medicine, Houston Methodist and ALS/MDA Clinic at Methodist Neurological Institute  

First to develop an immune-mediated preclinical model of motor neuron disease and then document the presence of neuroinflammatory markers in both the preclinical model and human sporadic ALS 
Documented enhanced neuroinflammation and activated microglia prior to evidence of clinical disease and motor neuron cell death 
Demonstrated the presence of increased intracellular calcium and altered mitochondria in human sporadic ALS motor neurons to help explain the selective vulnerability of motor neurons in ALS

2002  

Serge Przedborski, M.D., Ph.D., Columbia University 

Pioneered the investigations of motor neuron death in the SOD1 model of ALS 
Demonstrated the importance of the cascade of deleterious events, such as oxidative stress, inflammation and programmed cell death as related to the health of motor neurons in the spinal cord in ALS

2001  

Dame Pamela Shaw, M.B.B.S., M.D., F.R.C.P., University of Sheffield, UK 

Increased understanding of the cellular pathways of motor neuron injury in the presence of SOD1 gene mutations 
Identified the different subtypes of motor neuron disease based on genetics and molecular pathology  
Established the role of non-invasive ventilation in improving quality of life and prolonging survival of people with motor neuron disease

2000  

Jean Pierre Julien, Ph.D., Université Laval, Quebec City, Canada  

Made significant contributions to our understanding of the role of neurofilaments in ALS as well as the pathogenesis of SOD1 mutations 
Developed several novel mouse models and used them to test ALS therapeutics

1999  

Don Cleveland, Ph.D., Ludwig Institute for Cancer Research, University of California San Diego

Identified the protein tau 
Identified key steps that trigger disease and accelerate ALS progression 
Established the role of non-neuronal cells, including astrocytes and oligodendrocytes, in ALS disease and promoted the idea that disease is not cell autonomous  
Pioneered the use of antisense oligonucleotides as a therapy for human neurodegenerative disease

1998  

Ted Munsat, M.D., Tufts University School of Medicine 

Served as president of the American Academy of Neurology, 1989-1991; chair of the Continuing Educational Committee of the AAN; and founding director of AAN’s premier continuing medical education journal Continuum: Lifelong Learning in Neurology  
Chaired the World Federation of Neurology (WFN) ALS Research Group that published important international diagnostic guidelines 
Pioneered many outcome measures that are still in use in clinical trials today

1998  

Lewis Rowland, M.D., Columbia University College of Physicians and Surgeons 

Chaired the Department of Neurology at Columbia for 25 years and also served as chair at the University of Pennsylvania.  
Co-founded the Eleanor and Lou Gehrig MDA/ALS Center  
Served as president of the American Academy of Neurology, the American Neurological Association and the Association of Professors of Neurology

1997  

Jeffrey Rothstein, M.D., Ph.D., Johns Hopkins School of Medicine 

Contributed to the development of the first FDA-approved drug for ALS, riluzole 
Provided the first evidence that glial dysfunction could contribute to and accelerate neurodegenerative disease 
Responsible for many ALS therapeutic candidates, including small molecules, gene therapies and cellular-based therapeutics

1996  

Robert Brown, Jr., M.D., Ph.D., University of Massachusetts Medical School 

Discovered the first ALS gene, SOD1, in 1993, which led to the creation of the first mouse model of ALS in 1994 
Played a central role in the discovery of other mutations or genetic variants in several ALS-related genes including ALS2, DCTN1, KIFAP3 and FUS/TLS 
Reported evidence suggesting that the SOD1 gene also played a role in sporadic ALS

1996  

Teepu Siddique, M.D., Northwestern University Feinberg School of Medicine 

Initiated the molecular genetic approach to ALS in 1984, which lead to the successful identification of many genetic causes for ALS, including SOD1, ALSIN, PON, FUS, TDP-43, SQSTM1 and UBQLN2  
Identified a common pathology for all ALS involving UBQLN2 and SQSTM1 
Engineered several models for ALS, including the first genetic model for neurodegeneration, SOD1