ALS Association and Packard Center Announce the First Scientific Grant Award from the Winokur Family Research Initiative

Baltimore, Md., (March 10, 2014) –

Diane Winokur, founder of the Winokur Family Research Initiative, at the ALS Treatment and Research Center at UCSF, a Certified Center of Excellence that her family also helped to establish.

With the opening of the 14th Annual Robert Packard Center for ALS Research Symposium, the Packard Center and The ALS Association are pleased to announce the first scientific grant award from the Winokur Family Research Initiative. The inaugural grant will help to fund a project under the direction on Phil Wong, Ph.D., a Professor of Pathology at Johns Hopkins University and Liam Chen, M.D., Ph.D., Assistant Professor of Pathology at Johns Hopkins University.  The study will focus on the use of animal models of TDP-43-linked ALS-FTD (frontotemporal dementia) to validate and characterize newly identified therapeutic targets for ALS.

ALS (amyotrophic lateral sclerosis), 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.

This study is important because it will help identify the valid targets needed for developing effective therapies for ALS. The targets identified by Drs. Wong and Chen will yield a clear understanding of how TDP-43 kills neurons that will identify and develop mechanism-based therapeutics. Previous studies have shown that TPD-43 proteinopathy, which involves malformed proteins, is common in both sporadic and familial ALS and FTD.

“The Packard Center is pleased to have the opportunity to, once again, partner with The ALS Association to work on this important project. We thank our friend Diane Winokur for her support of the work we do to combat ALS and are pleased to honor her and this initiative at the onset of our Annual Scientific Symposium,” said Piera Pasinelli, Ph.D., the Packard Center’s Science Director.

The Winokur Family Research Initiative was conceived and initiated specifically to fund promising early-stage research by The ALS Association Golden West Chapter. Through a unique collaboration between the Packard Center and The ALS Association, groundbreaking, targeted studies are supported by a peer-reviewed process that is results-oriented and highly accountable.  The goal is to fund promising early-stage ALS research and move it forward more quickly. Besides providing needed funding for the organizations’ ongoing commitment to ALS research, the Winokur Family Research Initiative will also encourage scientists to work together toward the ultimate goal of one day finding a treatment or cure for ALS.

Diane Winokur, founder of the Winokur Family Research Initiative, is a highly-respected leader in the fight against ALS. She, and her late husband, Bob, had first-hand knowledge of how devastating ALS is, having lost two sons, Douglas and Hugh, to the disease.  Winokur serves on the boards of the Golden West Chapter and The Robert Packard Center for ALS Research and was recently appointed as the ALS and MS representative on the Independent Citizen’s Oversight Committee, the governing body of the California Institute for Regenerative Medicine (CIRM).

“The ALS Association is delighted to honor Diane Winokur and partner with The Packard Center for ALS Research on this exciting project,” said Lucie Bruijn, Ph.D. MBA, Chief Scientist of The ALS Association.

The Packard Center’s Research Symposium is an annual meeting, held in Baltimore, Md., that brings together 145 clinicians and bench researchers, postdoctoral students, and advisory board members – all leaders in the field of ALS.  This invitation-only event requires Packard-funded researchers to present their research findings that are subject to peer-reviews by the Center’s Board of Scientific Advisors. The Symposium is a review of all research projects funded by the Packard Center, plus a series of updates from clinical partners at the Northeast ALS Consortium (NEALS).  Attendees come from institutions in 21 states across the U.S., as well as from Canada, Belgium, Germany, France, Switzerland, and the United Kingdom.

About the Robert Packard Center for ALS Research
The Robert Packard Center for ALS Research at Johns Hopkins is the only international scientific operation dedicated solely to curing the disease. We are unique in our approach to fighting ALS, a motor neuron disease also known as Lou Gehrig's Disease, in that we combine and facilitate scientific collaboration and ALS research with fundraising for the development of new treatments and to finding a cure. For more information about the Center, visit http://www.alscenter.org/.

About The ALS Association Golden West Chapter
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.  The Golden West Chapter serves people with ALS and their families in 31 counties throughout California and the state of Hawaii. For more information, please visiti www.alsagoldenwest.org