Noted Golden West Chapter ALS Advocate Diane Winokur to Serve on California Stem Cell Agency's Governing Board

San Francisco, California. (November 20, 2012) —

From right to left- Diane Winokur, Dallas Forshew, RN, Hugh Winokur, and Dr. Catherine Lomen-Hoerth, director of The ALS Center at UCSF

On November 19, 2012, California Lieutenant Governor Gavin Newsom appointed Diane Winokur as the amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS) representative of the Independent Citizen’s Oversight Committee (ICOC), which is the governing body of the California Institute for Regenerative Medicine (CIRM).  CIRM was established through the passage of Proposition 71, the California Stem Cell Research and Cures Initiative, to make grants and provide loans for stem cell research, research facilities and other vital research opportunities.

 “We are delighted that Diane Winokur has been appointed to this prestigious and important position,” said Lucie Bruijn, Ph.D., Chief Scientist of The ALS Association. “Her contributions have been invaluable and she will be a tremendous asset in moving the ALS research field forward through CIRM funding.” The agency recently awarded 18 million dollars to Clive Svendsen, Ph.D., the 2010 winner of The ALS Association's Sheila Essey Award for ALS research.

As a key advocate in the field of ALS research, Diane has been an active leader nationally and internationally in science and biotechnology and has a keen grasp of the public-private partnership that drives innovation and discovery. Diane has been an active board member of several nationally and internationally renowned organizations.  She served on The ALS Association's National Board of Trustees for five years and is presently an officer on the Golden West Chapter's Board of Directors. She also serves on the boards of the Sanford-Burnham Institute and the Packard Center. Diane and her family helped in founding the ALS Treatment and Research Center at the University of California, San Francisco, a Certified Center of Excellence of The ALS Association.  Her direct experience with ALS inspired her commitment to providing a deeper understanding within the scientific community of the disease and the astonishing role that regenerative medicine holds in the search for effective treatments and cures. Diane’s youngest son, Douglas, was diagnosed with ALS in 1995 and passed away in 1997. Her oldest son, Hugh, was diagnosed with ALS in 2005 and passed away in 2010. 

“Diane Winokur is a pillar of strength within the ALS community and is among California’s leading voices about the opportunity and impact of ALS research,” said Fred Fisher, President and CEO of The ALS Association Golden West Chapter. “While there has been significant progress in the field of ALS research, we still have no way to explain how Diane could lose two children to the non-familial form of the disease. The ALS community still has far more questions than answers. CIRM holds out great hope that we will have the technology that will not only help us to better understand ALS but also find effective treatments to halt its relentless progression.”

“The ICOC is governed by 27 dedicated Californians representing patients, researchers and the biotechnology industry whose knowledge, passion and commitment to CIRM's mission has guided the organization since its inception,” said Kevin McCormack, Senior Director of Public Communications and Patient Advocate Outreach.  “They serve on behalf of all of the people of California and provide recommendations regarding funding, ethical standards and facilities.  Our patient advocates keep the agency's focus where it belongs- on the people who need cures for chronic diseases and illnesses, including diabetes, HIV/AIDS, autism, MS, and neurodegenerative diseases such as ALS.”

Honored to be appointed to the ICOC, Diane commented: "I am so complemented by the Lieutenant Governor’s confidence in me.  I have been working in the field of neurodegenerative research for almost twenty years and appreciate the toll that these illnesses have on patients and their loved ones. I am challenged to be a part of finding treatments and a cure through stem cells for ALS, MS and other diseases.”

“While many share our passion and commitment to ending Lou Gehrig’s disease, few people could bring the knowledge, expertise and leadership necessary to fulfill this important role at the ICOC,” Fisher added.  “I can think of no person better qualified to represent, not only the ALS community, but all of us who see the role that CIRM will play in changing the landscape of neurodegenerative disease discovery and treatment."