http://www.michaeljfox.org/flash/who_letters.html

JOAN & MIKE LETTERS

Michael J. Fox
Chairman, The Michael J. Fox Foundation for Parkinson's Research

Hello and Welcome.

The MJF Foundation and website exist because of your concern and encouragement. Do I hope you'll take this opportunity to make a financial contribution to our effort? Absolutely.

But -- and this applies especially to those visitors not affected by PD -- the mere fact that you show the interest and initiative to learn more about Parkinson's disease is a powerful boost to our entire community.

When I first told you, through PEOPLE Magazine and Barbara Walters (ABC's 20/20) that for seven years I had been living with Young-Onset Parkinson's disease, I didn't know what to expect.

For those seven years, I had kept my PD close, as I'd been taught to keep all my enemies close. That was how I viewed the disease -- as my own personal nemesis. I'd made it a private battle, a knife fight in a dark closet (a choice many young-onsets feel forced to make).

Then, sick and tired of being sick and tired, I decided I could use some company. I already had the love and understanding of my wife, Tracy, our kids, our extended family, and the unflinching support of friends, doctors, and coworkers.

What I craved was the company of other people with Parkinson's and the freedom to move around in the world without having to hide my symptoms.

So, I told you.....and held my breath.

I was unprepared for the tsunami of human kindness that would wash over me in the hours, days, and months to come. Your prayers, cards, letters, and personal stories about PD and other challenges were a revelation and inspiration to me.

If you haven't already heard me say this, thank you for your warm and humbling reaction, and for not crushing me under the weight of pity. Your genuine compassion strengthened my resolve to surrender my private battle and step up to help fight the greater (winnable) war to cure PD by decade's end.

A short time after my public disclosure I was introduced to Joan Samuelson, president and founder of the tireless Parkinson's Action Network.

The meeting would prove to be a major turning point in my evolution from patient to advocate.

Together we traveled to Washington, campaigning to increase the insufficient federal funding for Parkinson's research.

I learned firsthand why Joan is one of the true heroes of Parkinson's advocacy.

Less than a year later, we've joined forces to launch a new foundation, beginning with this website.

So please, browse the site. Visit often. Bookmark it.

Look for daily updates of PD factoids, news flashes, PD-related links, and upcoming online events.

We'll feature e-commerce, celebrity auctions, and e-chats with personalities from the worlds of entertainment, sports, politics, and medical science.

And we'll always have a few surprises in the works.

Your support will enable us to invest in cutting-edge research, carry on PAN's mission of vigilant advocacy on Capitol Hill, and make every effort to put ourselves out of business in the next five to ten years. Only a cure will do that.

My personal thanks once again for the amazing warmth and support you've shown me.

While there is no real way I can repay you for what you've given to me, I can offer you this: a chance to play a role in one of the biggest wins in scientific and medical history.

We need you to be a part of the victory over Parkinson's disease.


Wishing you Health,

Michael J. Fox
New York City



Joan Samuelson
President and CEO, The Michael J. Fox Foundation for Parkinson's Research

We have a dream in launching this Foundation and this website. It is the dream shared by the millions of people who live with Parkinson's: that they will be rid of its burdens and nightmares soon, forever.

We fervently want this to happen immediately. Here's the good news: We expect results soon - substantially better treatment and perhaps complete elimination of symptoms, in a matter of a few years; a complete cure a few years later. How dare we dream this? There are three big reasons.

First, because the scientists are ready to deliver. In scientific conferences and Congressional hearings,they predict Parkinson's to be the first brain disorder to fall - and, if funded aggressively, soon: within three, five or ten years.

The same Information Revolution that is giving us the Internet is arming scientists with the tools to cure heretofore-incurable disorders - and Parkinson's is at the front of the line. The harder they can work, the sooner it will come.

Second, because we live every day with this disorder - in my life, in Michael's, and the lives of our families and many struggling friends - and we will work hard every day to help the scientists deliver on this promise. We simply refuse to imagine a life in which the suffering is prolonged one minute longer than it must be.

Finally, because we believe you will help. We are buoyed by the hope expressed in the public response to Michael's discussion of his private struggle. We hear you saying no! -- it is simply unacceptable for Michael, or any other person, to bear this burden any longer.

So here is what we believe: when our story is told, the public will agree that it is time to treat Parkinson's as the public disaster it is, and devote the same resources that we would any flood, hurricane or earthquake.

We approach this challenge as if someone we knew cried out for a rescue from under an earthquake-damaged building. We intend to take every step: jump in and work as hard as we can, while seeking volunteer help from the public and calling for the best our government can deliver as well.

Here's how this translates into our work at the Fox Foundation:

We are working with the scientists to identify the most aggressive campaign available to bring the cure by the earliest possible date, so not one iota of extra suffering occurs.

We already have begun to define the agenda, increase federal funds, raise private funds and award grants.

We are alerting the public to the true disaster that is Parkinson's - so that every person understands what Parkinson's does to people. . . is aware of the huge public cost of Parkinson's when we are put out of work and forced into a disabled state. . . and the unfair neglect of Parkinson's research funding by our government.

We are reaching out to you to be at our side in this special rescue, responding as urgently as if we were trapped in flood waters or waiting under collapsed buildings.

We need your prayers, good wishes, and financial support.

We also would love to enlist you in our Advocacy Army for fair government research support.

So, this is our dream: to convert your pledges of support into the best medical rescue in human history.

With your help, we will shorten the time to the Parkinson's cure -- and, scientists say, also shorten the time to the cures of many other brain disorders.

Yes, it is ambitious.

It must be: your energetic response to Michael's call to action convinces us that we can marshal an amazing force.

That we can cut the time to the cure.

That we will save lives, and rescue dreams.

Welcome to this crusade.

We are going to have a great time. And get it done!


Sincerely,

Joan I. Samuelson
President/CEO

Read Joan's biography

http://www.michaeljfox.org/flash/who_joan_bio.html


JOAN SAMUELSON BIOGRAPHY

Joan Samuelson is a California lawyer who has lived with Parkinson's for 14 years since her first symptoms surfaced at age 35.

Nine years ago, Joan founded the Parkinson's Action Network after discovering that Parkinson's research funding was terribly neglected, and that a root cause was ignorance about Parkinson's in Congress and across the country.

She soon abandoned the practice of law entirely to devote herself to building a national Parkinson's advocacy force of afflicted people and their loved ones. Since then, the Network (known as "PAN") has joined together national and regional Parkinson's organizations with individuals across the country.

Together they are working to eliminate Parkinson's as soon as possible, through education, advocacy and Washington lobbying for a fair share of the national research dollar.

For her work in Parkinson's advocacy, Joan has received the California Federation of Business and Professional Women's Hall of Fame Award in 1993 and the Boalt Hall School of Law Alumni Association's Distinguished Serv ice Award in 1996.

In December 1996, Joan was named a California Lawyer Magazine "Legal Eagle," one of 30 California lawyers who "made new law, set new policy, continued their exceptional work, or changed the course of national events."

In February 1997, she was honored by the American Society for Neural Transplantation for "outstanding efforts and support for research in Parkinson's disease."



janet paterson
53 now / 41 dx / 37 onset
613 256 8340 / PO Box 171 Almonte Ontario K0A 1A0 Canada
visit my website "a new voice" at: http://www.geocities.com/janet313/