Thursday, November 29, 2012

Diane Winokur, Veteran ALS Patient Advocate, Named to California Stem Cell Agency Board

Longtime ALS patient advocate Diane Winokur of San Francisco, who has lost two sons to the disease, has been appointed to the governing board of the $3 billion California stem cell agency.

She fills the vacancy left by David Serrano Sewell, who resigned from the 29-member panel earlier this year after serving since the agency's inception. CIRM has 10 patient advocates on its board.

Diane Winokur
Photo -- Legal Momentum
Winokur is well-known in ALS circles. She sat for five years on the governing board of the national ALS advocacy group and currently serves on the board for the California state group, the Golden West chapter. She also served for six years on the board of trustees for the Sanford- Burnham Institute in La Jolla, which has received $37 million from the stem cell agency. She left Sanford in 2011.

Last summer Winokur appeared before the CIRM board to successfully seek approval of an $18 million ALS grant that was rejected by the agency's reviewers. Researcher Clive Svendsen of Cedars-Sinai in Los Angeles appealed the denial to the full board and was supported in emotional testimony by other patient advocates as well, including persons with the affliction.(See here for video of some of the testimony.)
The agency has awarded about $30.6 million, including the Svendsen grant, for research directly related to ALS.

Golden West issued a press release Nov. 21, lauding the Winokur appointment by California Lt. Gov. Gavin Newsom. The release quoted Lucie Bruijn, chief scientist of The ALS Association, as saying,
"Her contributions have been invaluable and she will be a tremendous asset in moving the ALS research field forward through CIRM funding."
The stem cell agency posted a blog item on Winokur's appointment in addition to a press release. CIRM Chairman J.T. Thomas said,
“Her knowledge, expertise and leadership will be a tremendous addition to the ICOC (the stem cell agency governing board) and help guide us in our work.”
Patient advocate Don Reed of Fremont, Ca., described Winokur in a 2008 blog item as “small, elegant, full of energy, an exclamation point of a person.”

(Editor's note: Based on information from CIRM and Golden West, an earlier version of this item incorrectly stated that Winokur is a current member of the Sanford-Burnham board.
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