Rachel Forber had initially responded well to treatment
In science and discovery Nobel Laureate Stanley Prusiner is a giant of a man. PubMed shows his name on over 400 studies. Dr. Prusiner is first of all a physician. He treats patients. He has the intellectual lead for the treatment and cure of Huntington's disease.
Rachel was ill with vCJD. vCJD is a variant of Creutzfeldt-Jakob Disease, similar to Mad Cow Disease , a condition closely related by misfolded protein to HD. From her death bed Rachel was treated by Dr. Prusiner. Rachel was the first human to have the symptoms of vCJD reversed. Rachel died from the side effects of Quinacrine but her death has brought us closer to understanding treatment for HD. Rachel is our hero in this war against HD. --Jerry 03-Nov-01
From:BBC Health 03-Dec-01
Rachel Forber had initially responded well to treatment
A British woman who became the first human guinea pig in trials to find a cure for variant CJD has died.
Rachel Forber's condition improved dramatically after she received a course of drugs from the Nobel Prize-winning scientist who discovered the cause of the human form of mad cow disease.
It is thought Rachel, 21, was taken off the drug, Quinacrine, after complications set in and affected her liver.
Following Rachel's death, at home in Newton-le-Willows, Merseyside, her step-father, Jason Taylor, said: "Rachel died earlier today. We don't want to say any more."
The former Royal Signals soldier was diagnosed as suffering vCJD six months after she began showing signs of depression last Christmas. She quickly deteriorated from a happy, active young woman, to a bed-ridden invalid requiring constant care. Rachel could not recognise members of her family, stand noise or sunlight or feed or dress herself.
Physician Stanley Prusiner
Her father Stephen contacted Professor Stanley Prusiner, who invited her to his San Francisco clinic to become the first human to try Quinacrine. She started taking it in August and within three months she was able to get out of bed, walk unaided and even swim without support.
When Rachel started taking the drug her father said he knew it was a last chance.
Mr. Forber said: "I spoke to Rachel's neurosurgeon who told me that the drug hadn't even been tested on animals. I said, 'I know'. "People may say, why did you put your daughter forward? I've always said from day one that I had nothing to lose but everything to gain. "When I signed the consent form for the treatment, what could I lose?"