Beach man’s family, friends raise money for stem cell research

VIRGINIA BEACH

Three years have passed since Josh Thompson was diagnosed with amyotrophic lateral sclerosis, the incurable disease that has stolen his ability to walk, talk, even breathe.

A ventilator breathes for the 35-year-old father of two. He is fed through a tube. He communicates by raising his eyebrows or blinking his eyes.

Even so, his family and friends say there's room for hope.

That came Friday in the form of $410,000 raised by friends, family and supporters that will go toward stem-cell research and outreach services for people with ALS, also known as Lou Gehrig's disease. The grants were announced at a ceremony in Virginia Beach.

Recipients of the 2010 JT Walk Stem Cell Research grants include Eastern Virginia Medical School, along with such stem-cell research luminaries as Johns Hopkins University in Baltimore, Emory University in Atlanta, and Cedars-Sinai in Los Angeles.

Each grant on its own might not make a huge showing in the multimillion-dollar world of medical research. But Bruce Thompson, Josh's father and a Virginia Beach developer, said Josh's supporters wanted to give a nod to stem-cell research.

It's a field that has generated both hope and controversy.

The hope comes from the ability of stem cells to renew themselves and develop into different types of cells in the body, giving them the potential to repair or replace damaged tissue. That concept is key for an array of degenerative diseases such as diabetes, Parkinson's disease, multiple sclerosis, paralysis and Alzheimer's. In the case of ALS, the hope is the regenerative properties of stem cells can stave off, or reverse, the disease's destruction of motor neuron cells that control movement.

The controversy has arisen in the use of stem cells. There are several different kinds, and the ones generating controversy are embryonic stem cells derived from eggs that have been fertilized in a lab. Former President George W. Bush ordered restrictions on federal funding of stem cell research derived from human embryos, supporting religious conservatives who believe life begins at conception. President Barack Obama has since lifted those restrictions.

There are other types of stem cells as well. Adult-derived stem cells come from blood, cord blood, skin and other tissues. Stem cells also can be harvested from umbilical cords after birth.

Bruce Thompson remembers the first time he saw a presentation at Johns Hopkins that showed stem cells being injected into the spinal cord of an injured mouse, which over time regained the ability to move. It was shortly after his son had been diagnosed with ALS.

"It gave me the feeling of hope," Thompson said. "We decided at that point anyone and everyone doing any kind of work along those lines, we wanted to find a way to encourage them and create a greater level of awareness."

During the past two years, Josh Thompson's friends and family have rallied together at annual JT Walks to raise record-breaking amounts of money for ALS research and support. About $200,000 in JT Walk funds has already been donated to Johns Hopkins for stem-cell research. Friday's biggest grant, $170,000, also went to researchers there.

Another grant went to researchers at Emory, which gained Food and Drug Administration approval last year for the first U.S. clinical trial of injecting stem cells into spinal cords of ALS patients. A Cedars-

Sinai Regenerative Medicine Institute researcher also received a grant.

The local study is being conducted by Earl Godfrey and Dr. Jerry Nadler from EVMS, and Roy Ogle from Virginia Beach-based Lifenet Health, an organ and tissue banking system. Godfrey, who is the principal investigator, said that project involves injecting stem cells derived from the fat tissue of rats with a form of ALS into their own spinal cords in combination with an anti-inflammatory agent that EVMS has been using in the study of diabetes.

They hope the treatment will slow or stop the loss of nerve cells that leads to paralysis and death in ALS patients.

A Duke University doctor was given a grant for his Twitter-based project called ALSUntangled, which helps people sort risks and benefits of off-label and alternative treatments for ALS. And ALS Association advocate Sarah Stein garnered a grant for her work helping ALS patients throughout the state.

About 5,600 people are diagnosed with ALS each year in the United States, and about 30,000 Americans live with the disease at any given time. Most people with ALS live two to five years after being diagnosed.

Thompson was diagnosed in late 2006. His wife, Joy, had their son weeks later. Another son is 18 months old. After each of their births, stem cells were harvested and banked from their umbilical cords, in the hope that some day science would find a cure for ALS.

Thompson appeared at a 2008 JT Walk, watching from the balcony of an Oceanfront hotel in a wheelchair. His father said he no longer wants to be photographed - it's not how he wants to be remembered.

One of the worst aspects of the disease for his son, Bruce Thompson says, is the emotional wallop when people say there is no hope. That's the impetus behind raising money for research. "Just knowing there are thousands of people who care about fixing this disease is uplifting to patients," he said.

Elizabeth Simpson, (757) 446-2635, elizabeth.simpson@pilotonline.com