ALS patient pushes for stem cell research, but medical uncertainties and ethical issues still cloud effort

By Sandi Dolbee
February 24, 2005

PEGGY PEATTIE / Union-Tribune
Bobby Carter hopes science will solve his disease. "No matter what,"
he says, "I'll continue to fight."

Robert Carter's words are punctuated with his tears. "I'm hoping that Proposition 71 and stem cells will help me," he says, sitting in his wheelchair in front of a quiet audience.

"I don't want to die."

Carter has amyotrophic lateral sclerosis, better known as Lou Gehrig's disease for the baseball player who also had ALS. Like a voracious Pac-Man, ALS attacks motor neurons, destroying the brain's power to control muscle movement. Patients lose the ability to walk, to talk, to swallow, to breathe.

There is no cure.

"I'm hoping I've got two to three years left," says Carter, a 49-year-old former postal worker whom friends call Bobby. "I'm hoping by then something will happen."

It had been a week since his brief talk. His testimony was part of a
presentation on ALS before the start of an early February meeting in La Jolla of the new independent oversight committee. The committee, which is charged with implementing California's $3 billion, 10-year stem-cell initiative, wants to highlight a disease before each monthly meeting as it begins its quest to fund stem-cell research and find cures.

It's late morning, and Carter is sitting in his Del Mar town house in denim shorts, a long-sleeve shirt and white socks. Next to him is a walker, which he uses for getting from room to room, except for when he goes up the stairs. "I have to pull myself up the stairs," he says.

Carter supported Proposition 71, which voters approved in November to pave the way for this initiative. Now, he wants to be part of the solution.

"I know it may not work, but if I can help move the research forward, that's my contribution to life," he says.

Waiting game

For Carter, this is a race against time.

The California Institute for Regenerative Medicine, the organization created by Proposition 71, is just getting started. The oversight committee is wrestling with issues such as where it will be headquartered and finding a president to head the staff. Carter is anxious for the awarding of research grants to begin.

"While they're still talking, I'm still failing," he says. "That's the frustrating part."

The most promising research is with stem cells from days-old embryos. Because these cells have not yet been programmed, they have the potential to become any cell in the body. Conjuring images of the cavalry coming to the rescue, these embryonic stem cells could conceivably replenish diseased organs and tissues - offering the promise of curing everything from Alzheimer's to ALS.

Carter leans down and touches his atrophied left leg. "Once they get stem cells, my muscles will come back."

But the science is far from certain. And so are the ethics.

Morally, opponents liken it to abortion because extracting the stem cells destroys the young embryos, knowns as blastocysts. For Joni Eareckson Tada, a quadriplegic who leads a Christian ministry for the disabled in Agoura Hills near Los Angeles, that means destroying a human life.

"The severity of my disability and the extent to which I am in need of a cure is not the issue," is how Tada put it in an interview with The Church Report magazine. "To kill human life in order to harvest its usable parts makes life a commodity, and that is an affront to God's creative authority. No cure is worth that."......

From San Diego Union Tribune

My comment: Another quote from Tada which needs to be challenged. The challenge to her is that if she isn't doing anything about the destruction of "human life" at IVF clinics, by trying to get IVF clinics out-lawed.....she should not be hypocritical about the use of left over blastocysts for stem cell research.

~ People acting together as a group can accomplish things which no individual acting alone could ever hope to bring about. - Franklin D. Roosevelt ~