Dear Mr. Stossel:

                   Thank you sincerely for exposing the outrageous disparities in funding
                   research, and the politically correct way in which the process operates.
                   It's been a long time coming.

                   Is there any possibility of a follow up?  Perhaps one in which the members
                   of the subcommitte are asked why they weren't at the hearing on 9/28.  It was

                   outrageous that only Chairman Spector and Senator Cochran were present.

                   I have included my personal assessment of the system's betrayal in a
                   piece I wrote about my family's long history with PD, which I had
                   attached to an e-mail I sent various members of Congress. I urge you to
                   please read it.


                   Much appreciation,
                   Charlotte Mancuso
                   (650-329-0967)
                   ---------------------------------------------
                   THREE GENERATIONS OF PARKINSON'S DISEASE:
                                         A CRISIS OF FAITH

                  Every generation of my mother's family for as far back as
                  I've  known,  has suffered the devastation of Parkinson's
                  Disease (PD):   My Grandfather Barone; his children,  my
                  mother, Anna, Uncle Laurie, Aunt Nellie, and now me,
                  Charlotte, his granddaughter.  We have all suffered  from
                  PD, a devastating neurological disorder that destroys brain
                  cells controlling the body’s motor function, and many
                  involuntary functions of the body.

                  When my mother was diagnosed with PD, she was 43, my
                  brother was 7 and I was 3.  By the time I was in grade
                  school, she required 24-hour care from us, which we alone
                  provided.  My Dad carried the largest burden, especially at
                  first, but all 3 of us pitched in, stuck together, and carried the
                  load for 24 years.  For example, when I wanted to start
                  kindergarten and go to school like my brother John, I was
                  told it was necessary for me to stay home in case my mother
                  needed help, since Dad was working and my brother was at
                  school.  Later, my father worked at night when John and I
                  were in school.  We endured on very little sleep for 24 years.
                  I'll spare you the details of the bloody falls, trips to the
                  emergency room, and the pain she endured before she
                  finally died of PD.

                  We stuck together, but in the early times, serious
                  consideration was given to splitting up the family:  I would go
                  to my God Parents---Aunt Peggy, my mother's sister who
                  later in life died of Alzheimer's, and Uncle Tony, who
                  happened to be my father's brother (they had no children of
                  their own); my brother would go to his God Parents---my
                  father's sister Mary and her husband Frank (they had only
                  one child and could have no more).  You can imagine the
                  anxiety we felt at the prospect of not only being removed
                  from daily life with our parents, but from each other as well; I
                  wondered when and if this would occur.  For all the pain and
                  suffering we endured, and it is a test of endurance to care
                  for someone with advanced PD, I am forever grateful to my
                  Dad for keeping us together.  I found out later that my father
                  had said to the family:  Look, if they were your children,
                  would you give them away?  It was never spoken of again.

                  As a young child, I had questions and prayers; questions
                  and prayers that still have not been answered:   How did she
                  get sick; would the rest of us get sick; would she ever get
                  well; when will doctor's find a cure like they did for polio; or
                  will she die and when?  I saw a faith healer on TV during the
                  fifties; shouldn't we take her there to be cured like  people
                  who got up from wheel chairs and walked away?  I was told
                  it was a hoax. Then there was, Why?...

                       Why can't Mom take me to school, go to open
                       school night, make me a sandwich, fix my hair,
                       finish that dress she had started making for me
                       and then had to abandon?

                       Why was God punishing her? What sin had she
                       committed? Since there was no medical rhyme
                       or reason for getting sick, she must have done
                       something wrong.  I prayed every night during my
                       very young years, and asked my parents, again,
                       Why? Why wasn't God hearing me and helping
                       her, when she was just getting worse and worse,
                       and our lives were getting more and more
                       difficult.  My mother told me she had not
                       committed a sin for which God was punishing
                       her; she said, "people cannot question the ways
                       of God."  What and who can I believe in?

                  I have a son; a brother with a son, daughter, and
                  granddaughter; and a cousin (daughter of the only Barone
                  living sibling of 5,  who hasn't been felled by a neurological
                  condition.)  Who and how many more will be diagnosed?  My
                  son asks me if it he will get PD, and I decide to have my
                  DNA tested. My cousin is worried about strange symptoms
                  that she is experiencing, much like the ones I experienced in
                  1996; I'm not sure what to say to her. She has two sons,
                  ages 6 and 14:  will they ask the same questions I asked my
                  parents?

                  In 1967, I was able to enroll my mother in a double-blinded
                  drug study for L-Dopa at Columbia Presbyterian Hospital in
                  New York, where we're from. She returned home without
                  improvement, but with a supply of  pills to continue taking.
                  She became very severely nauseous and ill for some time;
                  but she did something else as well:  she turned over in bed
                  for the first time in almost 2 decades, and then one day, she
                  got up out of bed for the first time in as many years, and was
                  able to walk a little.  I even have a picture of her "putting up
                  her hair!"  These things had been impossible for her.  But it
                  was not to last for very long.  She was too advanced when
                  science developed  L-Dopa; it was too late for her.

                  My mother was diagnosed in 1948, and died slowly,
                  painfully, and miserably in 1972, when she could no longer
                  move,  recognize anyone, speak, or swallow, at 67 years
                  old--7 months after my son was born, who she saw, but
                  could not comprehend.   I'm 54 now, and was afflicted with
                  PD in my forties, close to my mother's age of diagnosis. I,
                  like my mother, was in a double-blinded drug trial.   There
                  has been promising research for PD reported in the media,
                  but realistically, PD treatment has not advanced
                  substantially, and sooner or later my fate will be the same as
                  my mother’s.

                  I was told that mortals shouldn't question the ways of God;
                  but mortals can question other mortals:  why don't we know
                  the causes of PD, why can't we have better treatment than
                  we have, since for all the new therapies, people like Mo
                  Udall are still dying in nursing homes in the late nineties just
                  exactly as my mother did; and why is the Udall Act still not
                  fully funded?  For God's Sake! For my family's sake, for Mo
                  Udall's family's sake, and for the sake of the nation:  WHY?

                  Is the current generation of my family going to suffer the
                  same crisis of faith in God and Country? Let's all work for
                  success in speeding up a cure.  My family and the nation
                  can't wait any longer for the calamity of PD to be wiped out.
                  It is time to act!

                  Charlotte Mancuso
                  Young Parkinson's Support Group
                  668 Channing Avenue
                  Palo Alto, CA  94301