Many thanks for following in Stan Houston's footsteps in this ordeal -
grandiose letter to Oprah except for last line - a little mushy.  You have
my deepest affection in tending to this drive to eliminate Parkinson.
Regards.  Fleurette

At 12:07 PM 9/4/98 -0500, you wrote:
>Helen Mason suggested that I post a copy of the following letter I sent
>to Oprah.  It was also her suggestion that I send a copy of the PSA
>tapes.  The letter includes a new BIO for me as well.
>
>
>Dear Oprah,
>
>In looking at your topics, my suggestion is for a show on the issues
>involved concerning people with Parkinson's Disease would encompass most
>of them: Healing Yourself,  Making Dreams Come True, the Enormous Debt
>caused by PD, a cure would certainly Bring me Happiness, a cure would
>Change Life by the Yr. 2000,  and I would like the Financial Freedom
>from medical expenses and the fear of nursing home costs, and so forth!
>
>A program about people with Parkinson's Disease would provide a dynamic
>show.  It has:
>   1. Strong visuals.
>   2. Stories of heroic struggles.
>   3. People taking charge of their own lives despite hardships.
>   4. A tremendous economic toll both personal and to the taxpayers.
>   5. A community that is reputed to be the most informed about their
>disease.
>   6. Hope for the future because a cure is in sight with sufficient
>funding.
>
>My story is only one of millions.  When I was 44 years old I was
>diagnosed with Parkinson's disease and my family has watched as the
>disease has progressed over the past 12 years.  Parkinson's is a
>progressive neurological disorder that destroys the brain cells
>controlling motor function.  The available treatment only partially
>alleviates the resulting stiffness, tremor and slowness of movement that
>can eventually leave its victims unable to walk, to talk, even to move.
>For the past 12 years I've been Vice-President of the Parkinson
>Foundation of Harris County.  Among other things, I write a monthly
>newsletter that is distributed to over 1700 families.  I've chaired
>several fund-raisers--the last being the "Knock-out Parkinson's with
>Mohammed Ali" Gala which netted over $125,000 and is being used for
>research and community outreach.  I am enclosing a video tape that was
>one of the results from this endeavor, with a letter that was posted on
>a Parkinson Internet site.
>
>I want to be able to continue to contribute to my community, but I've
>seen my co-workers robbed of their ability to work because of the
>progression of their disease.  I know that without a cure I and millions
>of others will join my co-workers in total disability.
>
>Until recently, my medications (which cost $500 a month) have allowed me
>to live an "almost" normal life.  But now the disease has progressed to
>the point where the medications don't always work.  Today I can feed and
>dress myself, but the time to find a cure is running out for me.  A day
>doesn't pass that allows me to forget that I have Parkinson's disease
>and that I don't know what tomorrow will bring.  I spent a year
>recovering from a ten-hour back fusion caused in part by my Parkinson's
>gait.  Then due to the Parkinson's, I fell and fractured a kneecap.
>
>My grandson just celebrated his 5th birthday while I watched the party
>from the sidelines, because it was an "off" day.  The medications didn't
>work and I couldn't move.  There are times I can't hold my two year old
>granddaughter for fear I might fall with her or drop her.  I want to be
>able to play with my grandchildren.  I don't want them to remember that
>their Grandma couldn't move, or talk or smile.
>
>In addition to the human suffering it causes, Parkinson's is financially
>crippling our nation.  According to a study done at Duke University, the
>US economy loses about 25 billion dollars a year (that is more than
>$68,000,000.00 a day) to maintain about one million Americans who have
>Parkinson's disease.  The majority of the expense comes in the later
>years of the disease.  Our U.S. Government pays out a substantial part
>of that from our taxes--a conservative estimate might be 20% of it, or
>five billion dollars a year ($13,600,000.00 a day).
>
>Parkinson's stands to affect millions more than the 1-2 million people
>in the United States today when the Baby Boomers, now age 51, reach 57,
>the average age of diagnosis.  This aging Baby Boomer generation will
>greatly increase that toll, putting additional stress on the Medicaid,
>Medicare and Social Security Disability systems.  And 60,000 new cases
>are diagnosed each year=85one every nine minutes.   The public needs to
>know.
>
>Four long years ago, Parkinsonians and their caregivers launched a
>valiant grass roots effort to pass the Morris K. Udall Bill for
>Parkinson's Research and Education.  In November 1997, the Bill was
>finally enacted as an amendment to a larger appropriations measure.  The
>Parkinson's community rejoiced, thinking that at long last the $100
>million approved for research would soon be granted, but we are still
>struggling with Congress to appropriate the funding so that the benefits
>of that research can become a reality.
>
>This past June I joined with others affected by Parkinson's in
>Washington, DC to participate in the Parkinson's Action Network's fifth
>annual Public Policy Forum.  We "Parkinson's Activists" heard about the
>latest research and learned how to approach Members of Congress.  Until
>recently, we have been invisible.  We are not paid lobbyists, but we
>cared enough to make our voices heard.  We suffer with this disease
>daily.  So many of us have bravely labored to see the Morris K. Udall
>Parkinson's Research bill passed, because scientists have told us that
>with enough funding they anticipate finding a cure within 3 to 5 years!
>
>This battle could be quite a story and could also be part of a larger
>story on how the National Institute of Health is not stepping up to the
>neurological diseases associated with advancing age which will become
>the scourge of the Baby Boomers.  There is a window of opportunity now
>that will not be there as Parkinson's and the other neurodegenerative
>diseases become more prevalent.
>
>I can only imagine the number of decisions you must make regarding the
>selection for a show,  but my life as well as the lives of millions who
>may have already lost the ability to write or speak out in their own
>behalf could be helped by the exposure a show on PD could provide.
>YOU hold my life and the lives of millions like me, in your hands.  YOU
>have the power to help find a cure for Parkinson's by increasing public
>awareness and helping us put pressure on Congress to fund the Udall
>bill.
>
>PLEASE, Oprah,  help us get our lives back!
>Thank you.
>
>Sincerely,
>
>Nina Proler Brown
>
>--
>Nina P. Brown
>Phone: 713.729.1544
>Fax:     713.610.8662
>