2011 Sheila Essey Award for ALS Research

The ALS Association is proud to join with the American Academy of Neurology (AAN) in presenting The 2011 Sheila Essey Award for ALS Research to Leonard van den Berg, M.D., Ph.D. Professor of Neurology, University Medical Center, Utrecht, Netherlands.

This $25,000 prize honors the memory of Sheila Essey and was made possible through the generosity of the Essey Family Fund.  Past recipients have often used the funds to support research of promising young scientists on their teams.

Dr. van den Berg founded the first integrated Netherlands ALS Center.  He has initiated a nationwide population-based study aiming at complete ascertainment of incident ALS patients (Prospective ALS study in the Netherlands, PAN).  He has established a detailed database and biobank of more than 3,000 individuals.  It has generated a combination of large-scale genetic as well as environmental datasets.

“His untiring commitment to ALS has produced an international center of clinical excellence in Holland.  Dr. van den Berg has integrated his research program into the day-to-day management of people with ALS,” said ALS Association Chief Scientist Lucie Bruijn.  “He has made important observations about risk factors for ALS including smoking, and has shown that moderate alcohol consumption might be protective.”

To better differentiate motor neuron variants and treatable mimics from ALS he has performed prospective natural history studies of patients suffering from pure lower or upper motor neuron syndromes.  In addition to his clinical expertise in ALS, Dr. van den Berg leads a competitive and productive ALS genomics team. His laboratory was amongst the first to use the technology of genome-wide association studies (GWAS) in ALS.

“It is a great honor to receive this internationally recognized and prestigious award.  Receiving this award is recognition for the hard and excellent work of the researchers in my group,” said Dr. Berg.  “This award will encourage us to reach our obligation to find a cure for our patients suffering from ALS and related diseases.”

To translate new discoveries in ALS research into treatment for patients effectively, Dr. van den Berg has set up an infrastructure to perform web-based, investigator-initiated placebo-controlled trials.  He has introduced the futility, sequential trial designs for ALS as an alternative to a classic trial design, in which sample size is fixed.  This trial design allows trial cessation as soon as a treatment effect can be significantly demonstrated or denied. Trials on creatine and valproate have been completed and a third trial is currently underway using lithium.  Capitalizing on his experience in the Netherlands, Dr. van den Berg is leading a European Consortium (European Network for the Cure of ALS or ENCALS) to develop a Clinical Trials and Research Network modeled on the successful initiative of the North Eastern ALS Consortium (NEALS).

The presentation will be made during the 63rd AAN Annual Meeting in Honolulu, Hawaii April 9-16, 2011.