Michael J. Fox, principal figure in the fight to cure Parkinson’s Disease, received the Maurice N. Eisendrath Bearer of Light Award, one of the Reform Jewish Movement’s highest honors today. Below are his remarks:

I’d like to thank Rabbi Yoffie for inviting me to the Biennial, and for the tremendous honor of this award. It’s humbling to find myself in the company of the humanitarian giants who have been recognized by URJ before me.

Some of you heard me talk about stem cell research at the Religious Action Center in 2005. In thinking about Bearer of Light and the legacy of Rabbi Eisendrath — his tireless commitment to the principles of tikkun olam, “repairing the world” — I wanted to talk today about how we all carry out this legacy, whether on a world stage or simply in the context of our own lives. (Or both.)

We launched The Michael J. Fox Foundation in 2000, shortly after I went public with my PD diagnosis. I can’t say that when we started we really knew what we were up against. Our original intention was to cut through red tape, get money to scientists fast and speed new treatments to patients.

What we’ve learned, though, is that urgency and focused, high-risk funding only get us partway where we need to go.

The process of translation — that is, moving a promising idea from discovery to FDA approval — is a long and complex one. All told, bringing a single drug to market relies on dozens or more specialists with hugely varied experience and expertise. And it turns out that there’s a lot of room to question how well we’re served by the system we’ve created to accomplish this.

We’re all conditioned to think you solve complex problems by throwing money at them. Certainly finding cures takes a lot of money. But our Foundation believes driving translation is a question not of more money, but of more targeted money.

After all, between government, industry and private philanthropy, over a hundred billion dollars is already spent on biomedical research each year. But only a fraction of that amount is deliberately allocated to converting basic science into groundbreaking therapies.

In thinking about drug development, it’s helpful to envision a pipeline.

All the way at the beginning, you have basic discovery research. This is largely funded by the government and conducted by academic researchers in university labs.

At the opposite end, you have the much later-stage clinical research that’s funded and chaperoned primarily by the pharmaceutical industry.

The questions that drive translational research come somewhere in the middle.

These are questions that come too late in the process to be of interest to academics, who need to continually make new discoveries to survive and thrive in their publish-or-perish ecosystem.

And the questions come too early to engage industry, which is necessarily motivated by the profit margin.

But these questions are critical if we’re going to find solutions to benefit people living with disease.

Our Foundation zeroes in on these exact questions because our mission is to do whatever it takes to drive development of improved, practical treatments that will have a tangible impact on patients’ lives.

So what do we think it takes? For one thing, funding projects to “de-risk” 100 potential drug targets for PD so far. We don’t know the cause of PD, so we’re using our capital to broadly and systematically turn over every promising stone. And we use all the resources at our disposal — including funding, convening power, and partnerships with biotech and pharmaceutical companies — to keep targets with the greatest potential moving forward.

Given how long and complex the drug development process is, patients’ interests require every player — federal funders, individual disease groups and industry — to put their strongest foot forward every day. In light of this it’s hugely frustrating to think of our government actively holding back any area of research with potential to transform lives.

I think back to my brush with “less-than-compassionate conservatism” last fall while I was campaigning on behalf of pro-stem-cell candidates in the midterm elections.
(It bears saying that the work I do on behalf of specific candidates and campaigns is entirely separate from my work with The Michael J. Fox Foundation, which is as it should and really must be.)

First off, I have to say that I don’t mind getting a little bruised in a fight for something I believe in so passionately.

And it occurred to me pretty quickly that the situation last fall — let’s face it — did us a huge favor. It turned what might have been a one- or two-day story into something that held the attention of the country for two weeks.

Embryonic stem cells are in the news again because of the recent development in so-called “reprogrammed” cells. It’s an exciting step, and it’s work that could potentially have a huge impact on the entire field of regenerative medicine.

It’s good news that scientists tend to be apolitical — they’ll keep looking for every path to get where we want to go, because that’s what scientists do.

But the irony is that every big development in this arena in the past few years has involved finding methods to mimic embryonic stem cells. With the resources that have gone into recreating what everyone agrees is the gold standard, who’s to say how close we might be to new treatments by now if we could have been pressing forward with stem cells this whole time?

Of course, we’re once again hearing the predictable voices calling for an end to all work with embryonic stem cells — even trumpeting the development as a triumph of the current administration’s anti-science position.

On this I’d like to quote Jamie Thomson. He’s the scientist who first created human embryonic stem cells in the 1990s, and senior author of one of the two recent papers about reprogrammed cells. Here’s an excerpt of an Op-Ed he co-authored last week in The Washington Post:
“Far from vindicating the current U.S. policy… the recent papers… described a breakthrough achieved despite political restrictions. In fact, work by both teams… depended entirely on previous embryonic stem cell research.”
It is vital that work continue moving forward on embryonic stem cells.

As I understand it, Jewish tradition has always encouraged scientific and medical advances. Stem cell research is considered an embodiment of the mitzvah of healing.

Of course I can’t speak on Judaism as a spiritual authority, only as someone for whom it has truly become my community. For nearly two decades now, my family, friends and many of my professional colleagues have come from the world of Reform Judaism.
What I find myself drawn to, within this world, is the tradition of asking questions; seeking truth; and refusing to live according to a rigid dogma or to allow your life to be ruled by fear.

Around the time I heard from Rabbi Yoffie about Bearer of Light and the Biennial, I was talking to my Rabbi about David and Goliath.

When David was heading into battle, Saul and the Israelites wanted to give him a sword, armor and a helmet. (I have to say, as a father I can understand Saul’s impulse.)

But David said no. He went in practically naked, armed with a rock.

I think David understood something fundamental to the deepest ideals of “repairing the world”:

The armor, the weapons and the swords — they’re all just so much flash in the pan. Distraction is not what wins the battle. You just need the truth.

The truth is that patients have the right to expect more from our annual investment in biomedical research. They have a right to be out there as activists.

And it is a human right — if not a human obligation — to insist that all paths of research be followed toward potentially life-transforming treatments for disease. Toward “repairing the world.”

That is the humanitarian instinct at work in all of us.

Thank you. It has been a privilege to speak to you today.