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 31^st 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

• 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.

• 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.

• 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.

• 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.

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