Costco Connection - April 2009

Finding the cure

FOUNDED IN 2000, the Michael J. Fox Foundation (MJFF) is dedicated to finding a cure for Parkinson’s disease (PD) within the decade. The largest private funder of Parkinson’s research, it has provided about $140 million for research to date. Eighty-four cents of every dollar raised goes to funding research efforts, and the organization deliberately holds no endowment or excessive reserves, choosing to deploy donor-raised funds immediately in the ongoing fight for a cure.

Among the most promising research funded by the foundation:

 Two separate clinical trials to investigate Federal Drug Administration– approved drugs for cholesterol (simvastatin) and high blood pressure ( israd-ipine) that may have unintended but beneficial effects on PD. Both drugs are known to be safe for humans, and could move swiftly toward approval for PD if they prove effective.

 Investigation of a recently discovered gene called LRRK2, which is believed to be the most common genetic cause of PD. MJFF has invested $5 million to comprehensively drive this research.

 Studies of specialized proteins called neurotrophic factors that could help repair and protect the neurons that die in patients with Parkinson’s disease. MJFF has funded approximately $19 million in trophic factor research to date, in hopes of speeding clinical use of practical trophic-based therapeutic approaches.

To learn more about MJFF’s funding philosophy and their full portfolio of funded projects, visit www.michaeljfox.org.

CEO: Katie Hood (a Costco member)
Address: Church Street Station
P.O. Box 780
New York, NY 10008-0780

Phone: 1-800-708-7644

Web site: www.michaeljfox.org

Team Fox (a grassroots community fund-raising program): www.teamfox.org

financial community, helped in part by the role that had made him famous.

“When I started the foundation, all these Wall Street guys grew up idolizing Alex [his Family Ties character]. So in a way their help with the foundation was a way of giving back,” Fox says.

His foundation differs from others in that it does not focus on patient advocacy, although he is quick to laud those that do. The Michael J. Fox Foundation is dedicated to one thing: the eradication of Parkinson’s disease through direct funding to research.

“Studies that we’re funding are not … limited to drug therapies or potential cures but [are] also into the effects of exercise and diet, psychology or attitude,” he says.

While Fox’s attitude is positive, he notes the difficulty for many with PD to embrace an upbeat outlook.

“I always qualify my mental attitude … with the acknowledgment that depression is a very real part of this for many people and it”s just something

The Costco Connection Always Looking Up: The Adventures of an Incurable Optimist is available at Costco and Costco.com.

from which I’ve been spared. You can have all kinds of positive feelings about life, but it’s canceled by this ‘house’ sitting on you every day.”

He’s not simply looking for a cure for PD but looking to make a real difference.

“We need a new paradigm in this country for how we approach cure-based research,” he explains. “One of the things we do with our foundation is work with pharmaceutical companies to help them ‘de-risk’ certain elements of the drug pipeline. And we need to see more government action on that too. There are proprietary rights, but at a certain point they have to recognize their responsibility to share information to make possible cures. Now, it’s not part of the culture.”

Family ties

While his foundation and, to a lesser degree, his career are driving forces in his life, neither is as important to Fox as his family—wife Tracy; son Sam, 19; twin daughters Aquinnah and Schuyler, 14; and younger daughter, Esmé, 7—and he is determined to not allow Parkinson’s to derail his interactions with them.

“When my kids look at me,” he says, “they react more to the joy I experience. If you asked them to describe me, I don’t think the PD is the first thing they’d mention.”

Given his age and accomplishments, it is not too early for Michael J. Fox to consider his legacy. Taking no time to consider, his answer is a straightforward and earnest “I hope it’s as a parent.”

For Fox, Parkinson’s disease is a frustrating and annoying part of his everyday life. He has to coordinate his medication to get the most control over his body as possible to meet his busy schedule, whether performing, on behalf of the foundation or being with his family. But he is determined to live his life to the fullest.

“There are things that I can’t do to the extent that I used to do or, in some cases, at all,” admits Fox. “But there are more things that I do that I didn’t do before. We sometimes see subtractions when we’re ill. They’re not just subtractions. I’m not me minus anything; I’m me plus this experience. Whether it’s good or bad is a subjective thing, but this has assuredly changed my path. And changed the way I look at things. Changed the things I do. I started this foundation; I wrote two books now. I’ve had experiences meeting people and traveling I never would have had. I’ve seen the reaction people have to my message, which is a positive message and a message we can change things not out of panic but out of hope and a sense of purpose.”

Although he is not acting regularly now, he continues to do guest shots and voiceovers and will host a one-hour special on ABC, Michael J. Fox: Adventures of an Incurable Optimist, airing May 7, in which he explores optimism and talks to people around the world who have overcome great obstacles to live full and happy lives.