A view from the inside: one person’s perspective on the stem cell agency

On the first Monday of every month the stem cell agency staff all gather to talk about some of the most pressing issues facing us. It’s a chance to share information and exchange ideas. At a recent meeting one of our legal team, Cynthia Schaffer, used the occasion as the inspiration for this blog.

 It is a Monday morning staff meeting. As I look around the room at my colleagues I think – “why do they choose to work at CIRM?” For most the answer is NOT “the money”. After all, CIRM is a State Agency.

I believe that the majority would answer the same way I would- that they work at CIRM because they believe in the cause – pioneering a new therapeutic paradigm to help those suffering from illness.

Out of the almost 60 employees, the largest section of staff are PhD and MD Scientists with backgrounds in academia and industry. We don‘t have much turn-over in these positions. The scientists come to CIRM and they stay. They are dedicated employees in spite of the punishing calendar of new rounds of funding, the constant progress reports that need to be filed on existing research we have funded, plus grant reviews and a myriad of other deadlines.

The next largest group at CIRM is the grant managers who make sure the payments go out and the reports come in – we need to keep a good accounting of all the work we are funding to show that it is being done on time and meets the goals laid out for it.

Then there is the grants review team. They are constantly checking conflicts, finding experts to sit on Grants Working Group panels (these are the independent experts who review all applications for funding) and answering questions from applicants.

We have a strong business development team who are out touting CIRM’s 70+ portfolio of research programs. These will need additional funds to get through the strict regulatory process before they are widely available to public. We fund the early phase clinical trials – where they are taken out of the lab and tested in people – but these projects will need additional funding from either a big pharmaceutical company or venture capitalists, to get them to the final phase of the approvals process, a Phase 3 clinical trial.

CIRM’s communications staff tells the agency’s story everyday – how the science is progressing, engaging with the public to let them know how their money is pushing the boundaries of science, and engaging with the patient advocate community to make sure their voices are always a part of the conversation.

Beyond that, we have attorneys and accountants and computer people (who doesn’t?). I am in this last group of administrative staff who wear many hats and fill in many gaps.

I’m sure I don’t need to mention the agency’s senior leadership or the dedicated CIRM Board of 29 who are already the busiest people (Heads of Medical Schools, Chief Executive Officers of Health Care Systems) and yet the find the time to spend a minimum of 80 hours attending our Board Meetings and then spend double that amount of time reading the mountains of materials that CIRM provides in advance of the meetings so that the Board Members can be informed and productive.

However, as great as the CIRM staff is, both as individuals and as a group, CIRM will be judged by what it has accomplished. My personal answer to that is philosophical – where would the cell therapy field be without CIRM having jump-started it?

Do we care about getting credit or getting things done? To quote President Harry S. Truman – “It is amazing what you can accomplish if you do not care who gets the credit.” So, CIRM’s amazing staff keeps plugging along and I am filled with pride as I look around the room at the staff meeting because I work side by side with dedicated professionals on a mission to make the world a better place.

Cynthia Schaffer

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Chris Furbee’s Autobiographical Huntington’s disease film wins Slamdance Film Fest Award

Huntington’s Dance interview subject Gene Furbee (L) and film director Chris Furbee

Did you hear that loud cheer last Friday morning? Maybe your floor shook a little bit? That was the CIRM staff celebrating a big win for Huntington’s disease (HD) patient advocate Chris Furbee and the HD community in general.

This past week, Chris’ autobiographical film “Huntington’s Dance” won the 2014 Slamdance Jury Special Mention for Most Compelling Personal Journey. You can watch a trailer of the movie on YouTube. And here’s a short synopsis of the movie from the Slamdance website:

The story of one man’s reckoning with his family’s brutal, hereditary disease: Huntington’s Disease. This first person account brings the viewer intimately into their lives. We see his denial, his mother’s death, his grappling with being tested and his eventual diagnosis. His path from caretaker, to victim to activist is tracked in a unique diary fashion over the course of 18 years.

I first met Chris in 2010 when we featured him in our short video about Huntington’s and stem cell research. In the midst of that video interview, I learned that he himself was a filmmaker and he showed me some clips of the documentary that he hoped to eventually finish and get financed.

So it was exciting enough to blog two weeks ago about the completed film’s acceptance into the top-rate Slamdance film festival that runs in parallel with the Sundance Film Festival in Park City, Utah. Now I’m over-the-moon to learn of this jury prize.

Congratulations Chris for achieving recognition for an 18 year journey to tell your story and raise awareness about Huntingon’s disease!

To learn about CIRM-funded stem cell research related to Huntington’s disease, visit our HD fact sheet.

Todd Dubnicoff