It was a late night for CIRM staff and board members, but worth the long hours given the importance of the evening’s decisions. Tonight the board voted to approve funding for four additional teams of researchers working toward therapies in heart disease, a form of blindness called retinitis pigmentosa, Alzheimer’s disease and muscular dystrophy.
During the meeting we also heard an outpouring of support from heart disease and Alzheimer’s disease advocates.
One man, speaking in support of the heart disease application, had participated in a previous trial by the same group. He started by saying “I am supposed to be a dead man.” Instead, he’s alive, healthy, and a new grandfather. That’s a story we’d love to see repeated for all the diseases we fund.
Liza Gibbons, who sits on our board, took a moment to pause the proceedings after some particularly emotional testimony from Alzheimer’s advocates to thank those people for coming to the meeting. By 8pm when she made her comments, advocates had been sitting in uncomfortable hotel conference chairs for four hours waiting to tell their stories. They spoke about losing jobs, losing memories and seeing their life partners succumb to the hazy world of Alzheimer’s disease.
The new awards follow a governing board meeting in July in which the board
approved funding for eight of the disease team applications. At that time they sent another five awards for additional review. Tonight they heard the results of that additional review and chose to fund the four additional awards.
The meeting continues tomorrow with a vote on the Basic Biology IV awards. We’ll be issuing our press release on all of the funding decisions from this meeting after that vote. If you don’t already receive our press releases you can sign up on our website. You can also find the agenda for tomorrow’s meeting, which has information on how to listen in.
To get a sense of the emotional stories we hear from patient advocates at these meetings, here is a short video of ALS patients who spoke in July. This gives a sense of the stories and of the passion of our board—especially the patient advocate board members—for trying to find new therapies.