STEM CELL RESEARCH COULD LEAD TO CURES.

Byline: Stephanie Kornblatt Fromer Local View

AS one of more than a million Americans living with Parkinson's disease - a progressive degeneration of certain brain cells that control my ability to move, to swallow, to speak - for me the clock is ticking. That is why I am so interested in the future of a vital area of research using human embryonic stem cells.

After more than two years of study of the scientific promise and ethical questions raised by the research, the National Institute of Health is about to fund grants that will, finally, accelerate the work needed to realize stem cells' potential.

I hope President Bush doesn't block or slow this support.

Stem cells are created from microscopically small clumps of human embryonic cells left over from a couple's use of in vitro fertilization to increase their chances of having a baby.

Scientists have discovered that these left-over embryos, which would otherwise be destroyed, can be turned into many different dopamine cells for Parkinson's, islet cells for diabetes, or spinal-cord cells to repair and restore missing functions - producing cures.

Scientific experts testifying before Congress in December of 1998 described Parkinson's as one of the first disorders that would benefit from stem-cell research, and they predicted it could be done within a decade - as soon as five years - if the funds to tackle this problem were available. These cells have already been used to duplicate dopamine-producing cells (those that control motor function and are lost in Parkinson's patients) in rats.

This research could rescue me and my friends.

I am 50, a divorced mother of two children, diagnosed with Parkinson's more than six years ago. Prior to contracting this catastrophic disease I was very active. Now I am unable to do the things I loved to do, like sing, dance, or play ball with my son or daughter.

I was pursuing an acting career. I was training my voice fo opera, and I loved to dance. This disease has taken away my livelihood.

I think what is scariest for me is that one day I won't be able to get out of bed by myself.

What has been so devastating for my children is for them to see me rigid, frozen, unable to move.

What people don't know is Parkinson's will lead to a permanent vegetative state. That's what I have to look forward to.

In May of 1999 I founded an online support group catering to the early onset patients, some with families like mine. My goal and mission is to help them live a more productive life through emotional and social support. I am working very hard to accomplish this, while at the same time making sure my online membership is up to date on all current Parkinson's information.

I have become very active working with Joan Samuelson of the Parkinson's Action Network, the National Parkinsoon's Foundation and now the Michael J. Fox Foundation. I am producing a documentary on my life with Parkinson's Disease. This vivid documentary is a true case history of the disease, and it offers a challenge to each of us with this disease that has no cure - yet. My purpose in making this documentary is to create more public awareness and to increase funding for research, so not a single one of us has to suffer anymore and a cure can be found.

I was very depressed after I was diagnosed in 1994. I thought, How could I get this dreaded disease? I am too young!

I went from shock to denial, to depression, to grief, to acceptance and now to hope.

What's difficult about this disease is the pain you endure, especially in the mornings. You experience stiffness and rigidity, and can hardly get out of bed. You must wait for about an hour before the drugs kick in.

It has become so devastating, most of all for the kids, for them to see me frozen, unable to walk, speak or fix breakfast. Prior to being diagnosed I used to be very involved in my children's activities, but Parkinson's has given me limitations.

My condition now is almost stable, though the disease is still spreading to more of my body functions.

The last year has brought important developments for stem-cell research. Guidelines were issued providing safeguards ensuring that these cells are retrieved and used in a proper manner.

A Senate appropriations committee hearing featured Michael J. Fox, who spoke out strongly in favor of the research. Recently, 80 Nobel laureates wrote President Bush in support. Furthermore, a recent poll by the Juvenile Diabetes foundation found that twice as many Americans support federal funding of stem-cell research as opposed it - 65 percent to 26 percent.

Recently, President Bush asked the Department of Health and Human Services to review the issue. He did so without stopping federal funding in the interim, which is good. The president has expressed his opposition to the research, however, and remains under significant pressure from some traditional supporters to oppose it.

So we wait and worry.

Imagine how this uncertainty feels to those of us with Parkinson's, and to those rendered partially paralyzed with a spinal-cord injury, or those with diabetes who face blindness and amputation.

It's very hard to listen as a very small but vocal opposition tries to scare the public by pretending that this is an abortion issue or that stem cells are really a child. These arguments are unfair and untrue.

I hope President Bush will reject inflammatory rhetoric and distorted claims made by those who oppose this research.

My message to the president and members of Congress is simple: Halting federal funding for this research would deny any rescue to millions of Americans.

I urge you to join me in making your voice heard on this important issue by writing or calling the president, our U.S. senators and our congressional representatives.