HARRISON – The house, the last one on a secluded road through the woods, is unmarked save for a sign on a tree reading “Orsini.” Its occupants, though, are reaching out to millions of people around the world as they lead the fight against a painful nerve disease.

American RSDHope operates out of a basement office. It consists of four people: Lynne Orsini, the executive director; her son, Keith Orsini; her daughter, Karen Toner; and her son-in-law, Jim Toner.

Beyond the small office, the organization reaches out to the millions who suffer from reflex sympathetic dystrophy syndrome. The disease is also known as chronic regional pain syndrome.

The disease’s symptoms include an intense burning pain, inflammation of the skin, spasms, short-term memory loss and insomnia. It is often accompanied by allodynia, a condition where a person’s sensitivity to touch is heightened, sometimes to the point where wind blowing across the skin is extremely painful.

“The pain level of this disease is horrible,” Karen said. “It changes your life.”

According to a chart provided by American RSDHope, the disease is the most painful form of chronic pain when compared to other conditions on the McGill Pain Index.

The organization started its work in 1995 after Lynne discovered that her son was suffering from the disease.

“We couldn’t find any information on it,” she said.

Keith’s illness was originally misdiagnosed, which Lynne said is a common occurrence. After fracturing his spine in a car accident, the RSDS began to affect his entire body.

After Keith’s illness, Lynne began communicating with other people suffering from the disease and the organization was born.

“Little by little, it kept growing,” Lynne said.

Today, American RSDHope has helped start support groups across the nation and has contact with groups in England, Australia, Canada and South Africa. It provides information to those suffering from its disease through information packets and its Web site, http://www.rsdhope.org/

Lynne said the organization raises money by selling awareness items such as T-shirts and bumper stickers. Donations go straight to research, and RSDHope recently announced a $50,000 research grant will be given to Dr. Richard Boles of the Children’s Hospital in Los Angeles.

Lynne said the organization began looking for a matching donation after raising $25,000. They received one from the Reflex Sympathetic Dystrophy Syndrome Association, another RSD awareness organization based in Connecticut. The association also alerted them to Dr. Boles’ work.

Boles and fellow researchers will analyze the mitochondria DNA samples from 300 individuals who have been diagnosed with RSDS.

The goal of the study is to identify whether energy deficiency plays a role in the cause of RSD, which Boles hopes will lead to more successes in the treatment of the disease.

“We’re pretty excited about it,” Lynne said. “I think it holds a lot of promise. But I know we’ve got a long way to go.”

RSD is divided into Type I and Type II classifications. Type I can result from simple trauma, such as a sprain, or more complex injuries, such as fractures and heart problems. In these cases, a nerve injury cannot be identified right away. Type II, also known as causalgia, is a definable major nerve injury, due to noticeable damage to the nerves.

There is no cure for the disease, although treatments are available. These include the use of nerve blocks and intrathecal pump implants that deliver medication directly to the spine. Ketamine treatments show the most promise, though they are usually not covered by insurance.

Lynne said most RSDS sufferers are disabled due to the intense pain or the medications they must take.

In rare cases, RSDS can be fatal, although Lynne said it is unclear whether this is from the medication, pain or other causes. She cites suicide as the most prevalent cause of death among sufferers of the disease.

American RSDHope’s activities include a mentor program where a person who has had the disease for two to three years can help someone else who has been diagnosed with the disease.

“There’s a lot of angels out there,” Lynne said.

While she handles many of the organization’s activities, the other family members all have a role. Keith maintains the group’s Web site, Karen handles the e-mail, and Jim helps with a variety of tasks, including heavy lifting.

Lynne’s husband, Bob Orsini, died two years ago, but had played an active part in the activities.

“He put his heart and soul into this,” Karen said.

“And his retirement fund,” Lynne added.