Thursday, July 23, 2015

Parkinson's Patients Dismayed by Slow Work at California Stem Cell Agency

OAKLAND, Ca. -- Directors of the California stem cell agency today unanimously approved $40 million for a program to advance or "translate" basic research during a session that was marked by emotional pleas from Parkinson's Disease patients for much faster action.

The contingent from the San Diego area told directors and agency officials they were not moving fast enough to fund a research effort that they supported.

One patient advocate, Jenifer Raub of San Diego, said it was "outrageous" that the effort could not even be considered by reviewers until next March with no funding until about 2017.  Another unidentified patient said,
"Don't let policy, bureacracy and procedures stop this for another year."
Agency officials said that the time is required to meet legal requirements for the competitive grant process and reviews of the proposals that would be submitted.

Individuals appearing at the meeting were largely associated with Summit4StemCell of San Diego and have raised to $2 million to back research by Jeanne Loring, head of the stem cell program at Scripps Research in La Jolla.  The comments appeared spontaneous in reaction to the CIRM staff presentation on the new program. Loring told the California Stem Cell Report she did not organize the comments.

The agency's new, four-round, translation research program promises cash to researchers within nine months of submission. The program says that applications will be accepted in September and March of each year. Asked about the timetable, Mills told the California Stem Cell Report that it will begin in 2016.

Mills later told the board that the agency needed to be responsive to patient needs. He said he would "see if there is anything we can do." He said he would report back to the board on the matter.

(The last paragraph in this item was added about one hour after its initial posting.)

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  1. Anonymous9:13 AM

    I overheard a conversation with Dr. Loring and someone else (CIRM staffer maybe?) yesterday that seemed to suggest that she had submitted an application to CIRM for this project and that it was reviewed, and its reception was not favorable. It sounded like the score it received was around the number of ballplayers the Padres carry on their team. I wonder if the intrepid blogger could check this out with Dr. Loring? I remember the San Diego Parkinson's patients coming to a prior meeting and the ICOC seemed determined to get the project reviewed in the Translation round that concluded in March of this year. Did that happen? Did it get scored? What was the score?

    1. Anonymous could not have overheard a conversation like this because it didn't take place. All I talked about with CIRM staff was their advice about CIRM 2.0. Anonymous, do you work for CIRM?
      The Preclinical Research RFA (not Translational) that anonymous is referring to was the last of the pre-CIRM 2.0 RFAs, designed under Alan Trounson's presidency. It was intended to be an extension of funding for investigators who had identified a clinical candidate using a CIRM Early Translational grant. We did not meet that criterion, nor could we raise the 1:1 matching funds that were required under the RFA.
      The Preclinical RFA was a bad fit for us- our project did not qualify under the very precise requirements of the RFA. Therefore, we withdrew our application as soon as we heard about the plans for CIRM 2.0. We released the (substantially less than 1:1) funds that we had and put the money back into moving forward with the research.
      As anonymous must have heard from Dr. Mills, the pre-CIRM 2.0 RFAs had a "whack-a-mole" quality - we felt that had to apply for grant programs that were not appropriate because we never knew when-or if- another opportunity would arise.
      The Preclinical RFA was the perfect example of one of these fleeting opportunities that was not appropriate for our project. But we had to try to whack the mole, since we can't afford to miss any possibility for funding, no matter how slim the chances.
      I am involved in one of the Preclinical Awards that was granted, for orthopedics. The PI for that proposal had all the credentials- matching funds and the translational grant precursor, but it was still not easy to get funded.
      The Translational program under CIRM 2.0 DOES fit our Parkinson's disease project, and we look forward to finally be able to ask CIRM to help fund our project.