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| Jon Shestack(l) with J.T. Thomas, chairman of CIRM, at a 2012 board meeting California Stem Cell Report photo |
Patient advocate Jon Shestack , who
resigned this week as a director of the
California stem cell agency, was on board on Day One in December 2004
when the agency's work began with no offices, no desks, no chairs, no phones and
no ability to even write checks.
Shestack's appointment came as a result
of his work in the autism community. He and his wife, Portia Iversen,
founded Cure Autism Now in 1995. A Hollywood film producer, Shestack
rattled cages at CIRM from time to time during his eight years of
service. And earlier this week, he wrote a heartfelt, eloquent
resignation letter, which he provided to the California Stem Cell
Report. The full text can be found below. Here are some excerpts.
“Over eight years there were moments that were inspiring, some were contentious, and there was a bruising number of meetings but through it all, the board was involved, passionate and, will forever be for me, the gold standard when it comes to integrity.
“The same goes double for the staff – truly the most excellent, devoted, committed group of people I have ever had the pleasure of working with.”
“When I started at CIRM, my sweet son with autism was 12. Now he is 21. Over eight years our family has learned more about how many are the challenges that await him and how few the opportunities he has to look forward to. We have seen his world get smaller and smaller. While my son is special to me. He is not unique. There are thousands and thousands affected by mental illness who need a better life.
“Sometimes feel that I have failed these people, in particular those affected by autism or cerebral palsy. Though CIRM ran first-rate workshops on these disorders, we did not do all we could to follow up, put out disease-specific RFAs and get in proposals that addressed the workshop recommendations. I wish I had been more persuasive."
“In the movies, the third act is where the hero takes stock of all the previous wins and losses, all the hardships and lessons learned, and she puts all that knowledge together in new, and surprising ways until victory is within reach! As CIRM enters its third act, I hope it will do the same. I hope it will challenge itself, always put the urgency of the mission ahead of everything else and be willing to question the policies that have been so successful in the past, and consider that new ones may be needed for the future.
“And this is the future as I see it for CIRM. We will have faith, but we will continue to earn our miracles We will use our hearts and our minds to rip those miracles out of the dreamy future and make them real today. We will seek out the best scientists and encourage them to use all their wisdom, art and discernment to bring us cures. And when we have done that, we will do it again the next day. We will be optimistic, but not satisfied. We will question authority, despise complacency and above all love those among us in need of healing--this is the obligation without end, whose reward is also without end.”
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