BROOKFIELD, Wis. -- There is a stem cell research project under way in Wisconsin that could change almost everything about that field.
It could lead to medical breakthroughs without the ethical concerns that often surround stem cell research.
But what may be more incredible is the local man who’s helping to make that project possible.
Researchers at the University of Wisconsin-Madison are moving forward on the study of skin stem cells, which, they believe, may eventually replace embryonic stem cell research.
And it’s happening, in part, because of a Brookfield man who simply refuses to let anything stop him.
In a UW-Madison laboratory -- floating in a tube of red liquid -- is the future. There are tiny cells that may hold the key to curing terrible diseases or helping the paralyzed to walk. “These are cells we can take from someone’s skin, a skin sample. We can put them in a test tube, add some genes, a cocktail of genes, and we can make them into embryonic-like stem cells,” UW-Madison stem cell researcher Clive Svendsen said.
Stem cells that aren’t from embryos. Stem cells that may some day fulfill the promise of this medical science in a way that even its staunchest opponents can accept. “The ethics have plagued the field of embryonic stem cell research because you have to destroy an embryo in order to make the embryonic stem cell lines. The new induced plueripotent stem cells get around the ethics. It’s a whole new age of stem cell biology,” Svendsen said.
The work these researchers are doing is part of what’s called the Jeff Kaufman Project, named for a man who has helped spearhead the effort in an almost miraculous way. Jeff Kaufman can’t speak and can only control a few facial muscles. He communicates with his wife, Jan, by moving his eyes.
Diagnosed two decades ago with ALS, Lou Gehrig’s Disease, he’s now paralyzed and bedridden. He can’t even breathe without the help of a ventilator.
But each year, along with family and friends, he coordinates and hosts a fundraising event that has raised millions to help this new research move forward. “Jeff’s been sick for twenty years, so we’ve heard of a lot of research, and we’ve heard a lot of promises (but) nothing. I don’t get excited about research anymore really -- except I am really excited about this,” Jan Kaufman said.
Not only has Jeff Kaufman helped fund the research through his efforts, but he is also one of the project’s first skin cell donors.
“They’re just going to grab some of his skin cells, and then they reverse them so they’re similar to embryonic stem cells,” Jan Kaufman said. Things weren’t always this way. Jeff Kaufman was an up-and-coming lawyer, a former athlete and the father of four, when he was diagnosed with ALS in 1989.
It’s a disease that often proves fatal within a few years, but Kaufman would not accept a death sentence.
As his condition worsened, he chose to go on a ventilator to allow him more years to watch his children grow.
“He wants to live more than anyone I have ever met. He has always been determined, and he’s very bright. He knows how to go from the ground floor and how to reach his goal,” Jan Kaufman said. Now, he’s channeling that determination toward finding a cure by ensuring that the research goes on.
“My funding (is) off a grant that comes from his Evening of Hope funds that he raises for research. So that’s where my funding comes from. So I wouldn’t be here talking to you if it wasn’t for him raising all this money for research,” UW-Madison stem cell researcher Dhruv Sareen said.
“Well, he’s a hero,” Svendsen said.
Researcher and friend, Svendsen said that it’s about much more than money. He believes Jeff Kaufman’s most valuable contribution may simply be the spirit he brings to the project. “With someone like that behind you, that spirit, you just feel like something’s going happen, you know,” Svendsen said.
If people find motivation in that, great, that’s a plus,” Jan Kaufman said. Using his letter board, Jeff Kaufman said what matters most are results and moving the project forward. “Breaks my heart when someone gets diagnosed,” he said. “So I get very excited about the research.”
To his friend at work in the lab he adds, “Just tell Clive, ‘Get on it.’”
“I wish he could speak because he has a lot to say,” Jan Kaufman said. Still, somehow, his message always seems to get through -- just as it does each time his friends gather to raise money in what they call an Evening of Hope. It’s a name that carries a special meaning for Jeff Kaufman and his family.
“I remember when he was diagnosed, a lot of doctors he ran into would say, ‘We don’t want to give you false hope. We want you to understand what you’re in for,’ and Jeff kept saying, ‘That’s all I have to go on is hope, so don’t keep trying to take that away from me.’ And so twenty years later, he still has a lot of hope,” Jan Kaufman said.
And because of Jeff Kaufman -- so do countless others.
“He just has this determination to keep fighting and to keep funding research. He’ll always say, ‘Ya know, it may not help me, but it will help someone,’“ Jan Kaufman said. And so his works goes on. Jeff Kaufman’s fundraising efforts benefit not only the stem cell work being done at UW-Madison, but also the Wisconsin Chapter of the ALS Association. The skin cell science is still very new. Researchers said it will be some time before it can replace embryonic stem cell science in terms of effectiveness, but that’s what they’re working toward. On Monday, Jeff Kaufman will take part in what they call a skin punch test -- donating his own skin cells for research.
• The Jeff Kaufman Project has been fully funded by proceeds of the Evening of Hope.
• This article was originally published on the wisn.com website on May 7, 2009. It is
republished with permission.