The governing board of California's Stem Cell Agency approved an $18 million Disease Team research grant that aims to bring a stem cell-based ALS treatment to clinical trials. The project team is led by Clive Svendsen, PhD, director of the Cedars-Sinai Regenerative Medicine Institute and chair of the California ALS Research Network. Svendsen was the 2010 winner of The ALS Association's Shelia Essey Award for ALS research.

Several representatives of the Golden West Chapter, including California ALS Advocacy Committee's Co-Chair Jim Barber and Board Member Diane Winokur, were in attendance and provided compelling testimony in support of stem cell research that helped to secure CIRM support.

" We all knew it was going to be a long day, but had no idea how it was all going to unfold," said Cheryl Barber, Jim's wife.  "Dr. Svendsen's appeal was not heard until after 2 p.m."

Clive Svendsen PhD

"From comments by some Board members, the outcome was in doubt until the final vote," said Barber. "The Board's decision was based primarily on the science of Dr. Svendsen's proposal, as well as his reputation.  That said, the advocacy from the people with ALS and their family members in the audience clearly made a difference by giving the Board their personal stories and perspectives on the issue." 

"Nine proposals were send back for reconsideration.  Six were already approved; ours was #7 on the list for discussion and the only one approved on the spot", said Winokur, "The whole experience was so touching."

"It wasn't until the Board began their roll call for votes that we realized what was about to happen," said Cheryl.  "With each vote of "yes" or "aye," the emotion grew in the audience."

After the last vote was cast, making the decision unanimous, everyone in the room spontaneously applauded. The final announcement of approval brought cheers, tears, and hugs. Cheryl added, "One person living with ALS tearfully exclaimed, 'We are not alone'."

"This was a great example of synergy between intelligent CIRM board members, great science and articulate patients working together to bring this study to life," said Svendsen.  " My thanks go to CIRM, to the patients, and to staff in my amazing laboratory - who behind the scenes are the ones who will make this happen."