Today's the last day for the Oprah Winfrey HD Awareness email campaign initiated
by the Indiana HDSA Chapter! Add your personal message/suggestions for an HD
show on this Oprah NBC's link:
https://www.oprah.com/plugger/templates/BeOnTheShow.jhtml?action=respond&plugId=\
B2100004

Below is the shorter version of my message, emailed through the above Oprah link
[which has a word limit] and receipt acknowledge by email [don't know if you can
just send via this email address]: Oprah.com@... Wednesday, July 12, 2006
8:29 AM. The longer version [attached] contains more information as well as a
few pictures [faces of JHD] of my Kelly, Jacey & Karli Mukka, Judy & Carissa
Krivanek and Stacy Hill along with Karli's "Dear God" letter. I'll be mailing
the longer version snail mail to Oprah c/o
Harpo Productions
P. O. Box 909715
Chicago, IL 60607

Dear Oprah

I have written you several times over the past 15 years trying to entice you to
consider devoting one of your programs to help promote awareness on Huntington's
Disease [HD]. The first time I wrote you my only child, Kelly, was still alive.
She was diagnosed with Juvenile Huntington's Disease [JHD] when she was 15. She
died November 15, 1998 a few months shy of her 31st birthday. Kelly was a
devoted fan of your show.

Being the eternal optimist, this letter is another attempt hoping that my
writing will help you not only "hear" but to better understand the voices of all
Huntington's Disease families! Like many before me, today there are thousands of
families who are facing the "longest good-bye" of a child, spouse, sibling,
parent or relative who has been diagnosed with this insidious, horrific,
disease. Why the longest good-bye? Because the course of this disease can be
anywhere from 10 to 20 years after onset. Yes, TEN to TWENTY years!

Oprah, you probably didn't know that even you were born with the huntingtin
gene! None of us can live without it! When families learn a loved one has
Huntington's disease our priorities change; life and death take on a new
meaning. We begin to think, and survive, by living WITH Huntington's disease
rather than dying from it. The majority of us live life with HOPE for we know
hope lies in the meaning of life, not in life events.

It is my hope that Oprah will devote one show to Huntington's Disease. One which
would

a.. Interview people with the disease to have a better understanding what it
is like for them as they go through the progression of Huntington's Disease year
after year after year; loss after loss; yet show how most live their lives with
optimism and hope.
a.. Meet the young children with the Juvenile form of this disease. Show how
being diagnosed between the age of 5 and their teens affects them at home, in
school, with their peers and siblings. Meet their courageous parents who
struggle to help their child have the best quality of life for as long as is
possible.
a.. Have your viewers meet the young people and adults who are at-risk, many
who help care for a parent or family member with HD. Show what being at-risk
means to their lives, hopes and dreams. Help them to understand there is HOPE
through research so they do not become one of the statistics of those who choose
suicide over a fear of living a life with this disease.
a.. Interview the many physician's with a Huntington's Disease Society of
America HD Center of Excellence who see hundreds of people with HD every month
and truly understand this disease. Help them understand there are therapies and
medications that can help with their quality of daily life.
Portraying Huntington's Disease on Oprah could help educate your viewers to the
fact that this disease varies from person to person and show that the majority
of families courageously continue to support and care for their loved ones.
Perhaps, then, your viewers would learn a little more about this devastating
disease. How entire families lives are torn apart, both those with the disease
and those caring for them. Generation, after generation, after generation.

As a minimum portraying Huntington's Disease on Oprah would touch on the
desperate need for better support to our families. Overall it is an opportunity
to tell all people living with Huntington's Disease that there ARE people out
there who care about them, and that their dreams, feelings and dignity still
matter, very much.

Your viewers would learn that living with a terminal illness such as
Huntington's Disease could give them the greatest gifts of all; the importance
of love, patience, understanding, and compassion for others and for life's
littlest joys. So many in this world never even scratch the surface of the
understanding that these things are really what life is all about. Yes, there is
pain and heartache, tears and sadness. Although we can't see it when we are
experiencing them, these are the things that eventually teach us the real
meaning of life. Bottom line is that we need HELP not despair!

With warmest regards

Jean E. Miller
HD Patient Outreach
HDSA HD CoE at USF~Tampa, FL.
Email: jemiller@...
HD Links: http://get-me.to/hdlinks

Interested in learning about Oprah? See
http://www.achievement.org/autodoc/page/win0bio-1


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