My name is Marsha Miller and I am writing in support of SCNT research. Here is a picture of my husband, Joe and our daughter, Alison.

In November of 1997, my mother in law, who was in a nursing home, incorrectly diagnosed with Alzheimer’s disease, received the results of a gene test which showed conclusively that she had Huntington’s Disease. A new neurologist had said that her symptoms did not indicate Alzheimer’s and was doing testing to find out just what she did have. Since there was no Huntington’s Disease in her family, my husband and I thought this testing was just ‘covering the bases.’

When the nursing home called with the news, my knees gave out. I was familiar with Huntington’s Disease from reading biographies of Woody Guthrie and I had a pretty good idea of what we were in for. I knew the disease was devastating and I knew my husband had a 50 percent chance of having this gene.

I turned to the Internet and read up on Huntington’s Disease. When I read about the early signs of the disease, the irritability, the inflexibility, the nagging, the obsessions with trivia, my blood ran cold. These things had become an increasing problem with my formerly easy going husband and both of us had been puzzled.

Within three months, we had more bad news. My husband decided to take the gene test and learned that he too had Huntington’s Disease. Now our daughter, 21 years old and newly engaged, had to be told of her grandmother and father’s illness and of her own fifty percent chance of developing this disorder. Then in 2000, my husband was no longer able to work at his job as a systems engineer.

Huntington’s Disease is not like any other disease. It affects the whole person. My husband is losing his balance; he has involuntary movements; he drops things when his hand opens involuntarily; his ability to swallow is going. He’ll be able to compensate for that for awhile with the help of a diagnostic test to see the exact problem and a speech therapist to show him what to do, but eventually he’ll need a feeding tube. At some point during the course of this long, slow, progressive disease, he’ll need a wheelchair and he’ll be incontinent. He’ll need total personal care.

He takes antidepressants to control his inflexibility, irritability, and rages. He takes an antipsychotic medication to control his thinking. If he doesn’t, he imagines that he has a terrible wife and that all the little things that people who live together 24/7 find irritating about each other are major, important things. Without medication, he is angry at the world – at cashiers who don’t pack things the way he likes, at a friend who drops by when he planned to go shopping, at someone who interrupts him when he is painstakingly trying to tell them something that he has rehearsed in his mind.

His memory is poor and his judgment is impaired. He is de-maturing. He wants what he wants when he wants it. The caring man who put his family first and loved volunteer work is now concerned about whether he gets the biggest piece of cake at the dinner table.

And all of this is happening because of the devastation that the mutant huntington’s disease protein is causing in his brain cells. It is changing him as a person. I can’t think of a greater nightmare than to know that you are going to change and become less than who you are, that the memories you’ve made, the knowledge you’ve acquired, the values you have chosen will be lost – and that there is NOTHING you can do to stop the inexorable progression of the disease.

Huntington’s Disease is now my life, not a part of my life. Everything is my responsibility. I try to work from my home, keep house, pay the bills and the taxes, fight the bureaucracies (our insurance company frequently has a ‘computer error’ and denies that we have medical coverage), and supervise him. I can never relax, I am always waiting for the ‘other shoe to drop.’ And with Huntington’s Disease, it always does.

The chances are that this will be my life for the next fifteen years or so because this disease takes a long time to kill someone. And if we lose the toss of the coin and my daughter has this disease, too, this will truly be the rest of my life. And it had better be a long life, too, because we caregivers try our best to keep our loved ones out of nursing homes. Many nursing homes won’t take HD patients and they often don’t get the care they need even when you can get a nursing home placement. Most professional caregivers don’t understand HD and have had no experience with it. End stage HD patients take a lot of care. They can do nothing for themselves but at the same time they may be combative and uncooperative not just because of dementia but also because they can’t communicate and let you know what they need.

My husband knows what is happening to him and my daughter knows what may happen to her. How can any of us continue on a day to day basis and stay calm and sane and do what we need to do to get through the day?

The answer is hope. Our researchers are very close to treatments that will delay onset and slow progression and with better funding, they hope to be able to stop the effects of the mutant huntington’s protein altogether.

But Huntington’s Disease has already damaged my husband’s brain in ways for which he can no longer compensate. And if our daughter has the gene, it is likely that the protein has already affected her in subtle ways. So treatments are not enough. We need ways to restore what has been lost. Stem cells are the key to that restoration.

Please oppose any ban on the cloning of stem cells. Otherwise, tens of thousands of individuals will be condemned to decades of a half-life.