I guess it shouldn?t be that much of a shock that it took Alex P. Keaton to figure out how to catalyze drug development. Seven years after he was diagnosed with Parkinson?s disease, actor Michael J. Fox decided to start a foundation to push for more research into the disease. Now the Michael J. Fox Foundation for Parkinson?s Research is playing a leading role in funding the development of new drugs ? it is the sole backer of a test for a Parkinson?s vaccine ? and in working with big pharmaceutical companies like Sanofi and Bristol-Myers Squibb to keep experimental medicines moving through the pipeline. Its Fox Trial Finder helps patients find the right clinical trials for them. It has funded $313 million in clinical research, and is currently raising ? and spending ? money at a $50-million-a-year clip.
One of the biggest highlights of our first annual Forbes Healthcare Summit was that I got to sit down with Fox and his co-founder Deborah ?Debi? Brooks, to whom a lot of credit for the Foundation?s success must go. Highlights from the talk ? and the talk in its entirety ? are embedded within this post. I?ve also included a video discussion by two other amazing patient groups: the Multiple Myeloma Research Foundation and Myelin Repair, to which Michael and Debi both expressed a feeling of kinship.
Below, the bolded phrases below are mine. But the rest is all Michael J. Fox, very lightly edited.
Don?t Aim Low. I didn?t do it with the thought that hopefully we?ll jump for the moon and maybe we?ll land on the roof. I was going for the moon. I had the idea that if we approached it like a start-up, if we approached it like a business, the only difference being it was a business that was in business to go out of business.
Identify The Enemy. The stasis that?s kind of the enemy is not a hostile force. It hasn?t got anything against us. It?s just not designed in the best possible way to help us.
Find the right partner. What I realized is how special Debi was. I just wanted somebody kickass. Somebody who just said, ?Well, we?re gonna cure this and that?s what our goal is.?
I wanted somebody really ambitious and really with a business model in mind about, like, again, creating business that would be in business to go out of a business. But you have to create that business first. And it has to be successful in order to go outta business, which is all kind of screwy thinking, but it was too much for most of the nonprofit people that I met. I lost them at hello.
Create teams. Scientists are the people in school who [covered] their homework. And to walk into the room and seem them all together talking and sharing ideas and really going against all their instincts to move this forward was a really great experience.
How you get scientists to share? Well, you dangle grant money.
End secrecy? When I first disclosed my diagnosis I got a letter from a woman who said that she?d always gone to the same store and would get strange looks from the cashier. And then one day she went in and she was shaking. And he said, ?Are you okay?? And she said, ?I have Parkinson?s.? And he said, ?Oh, like Michael Fox.? And I realized then that I had an opportunity.
?and release power. I didn?t realize there was a section of the population of Parkinson?s patients that were young. You have a young dynamic, still-vital group of patients that can be involved in political outreach and fundraising and all that stuff. But they?re isolated because a lot of them are keeping their diagnosis secret.
They don?t want to lose their insurance. They don?t want to get fired. My humble contributions are not business, they?re not administrative, they?re not scientific. I always say I?m not an MD or a PHD I?m a GED with PD and a high PDQ. And just the general openness with which we were able to deal with the situation, a lot of those younger people stepped up and got involved in their communities and involved their families. And it just blossomed into a much more vital community.
Fail faster. This really is the dawn of a new age. I really did feel that this was a moment when we actually could find an answer. I mean, science is a series of failures. So the quicker you can get all those preliminary failures out of the way, the sooner you can get to some successes.
Get To Acceptance. What was key for me to lead me to the point where I could start this foundation was in my own journey as a patient was getting to acceptance, getting to to accepting that this was my situation. And going about, learning about it instead of trying to avoid it and trying to see it as a burden and not necessarily an opportunity.
Find Room To Move. What I would say to other patients is acknowledge the loss of it. There?s loss involved. And there?s pain involved and there?s depression. But if you can acknowledge the truth of it and then take the heft of it and take the weight of it and the size of it and just know how it fits in your life and how it fits in your world and see what other space there is left over, then there?s room to move.
I?ll be writing more about the Fox Foundation and about patient advocacy in the coming months. Send me your thoughts, suggestions, and ideas!
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