8:15, Saturday morning, March 29, 2008. A cluster of cheerful scientists (and me!) were standing in the lobby of the Holiday Inn, Athens, Georgia, and the shuttle to the conference was just about to leave. 

 

But Dr. Wise Young was not among us.

 

Margaret “Rockie” Wray, one of Dr. Ann Kiessling’s kind folks who helped organize the “Spinal Cord Injury Workshop: Barriers to Cure” conference, wondered aloud if it would be appropriate to call Dr. Young’s room, and tell him that the shuttle was leaving.

 

“I'm sure he will survive not hearing my remarks,” said Dr. Naomi Kleitman, Director of the National Institutes of Neurological Disorder and Stroke, (NINDS), who would be speaking first.

 

“He would be devastated to miss your speech, I am sure,” said Dr. Jose Cibelli, a small elegant man whose scientific credentials are matched only by his sartorial excellence,

“But he arrived very late last night, and may still be sleeping.”

 

Among the scientists, the consensus was kindness: if Dr. Young was not in the lobby on time, he must be really exhausted, and should be allowed to sleep.

 

But I couldn't stand it. Wise Young is one of the pioneers of research for spinal cord injury cure, and I knew he would want to be in on every minute of this conference.

 

I called up his room.

 

“Wise, this is Don Reed.”

 

There was a slight pause, as when one makes a long distance phone call, and it takes a while for the message to get through.

 

“Oh,” said the unmistakable voice, “Good morning!”.

 

“The shuttle is leaving for the conference now, but there will be another at 8:45. Nobody wanted to disturb you, but I wanted to be sure you knew about the shuttles.”

 

“How are you?”, said Wise Young.

 

The night before, I had missed the guided tour of the world-renowned Shepherd Center, arriving just in time to eat. (Well, okay, so maybe my timing was not completely off! There was a nice big chunk of salmon encrusted with walnuts that had my name on it, not to mention a couple slabs of carrot cake they did not get out of reach fast enough.)

 

But I cannot joke about something so magnificent as the Shepherd Center.

 

If I were to be asked, where should a paralyzed patient go, to be assured the best physical care and rehabilitation available, the Shepherd Center would leap instantly to mind.

 

The Shepherd Center also supports research. But for me, their genius is rehabilitation.

The Center (http://www.shepherd.org/patcare/spinal.asp) is exemplary in its overall care for people in the worst situation of their lives: when struck down by paralysis or traumatic brain injury. The program includes not only the immediate medical needs of the patient, but ongoing guidance as he or she struggles to re-take their place in life.

 

And now today, this morning, they were co-hosts of the convention.

 

In the auditorium of the Paul Coverdell Center, University of Georgia campus, I sat at a table, beautifully set up for note-taking. Every seat had a plug in, and Internet access.

 

Plugging in my magic laptop (well, it is magic-- a gift from Beth Drain, the professional recorder who transcribes virtually all the meetings of the California Institute for Regenerative Medicine—she saw my handwriting, shook her head, and said she had a laptop that still worked perfectly well, and did I want it? A beautiful gift like that is practically supernatural!), I turned to the person on my right side.

 

The room was jammed with talent. I wished I had time to interview every person present, because the entire audience had something fascinating to contribute.

 

Naturally, when meeting anybody new, I instantly launch into the “Hi, I am Don Reed, my son Roman Reed inspired the Roman Reed Spinal Cord Injury Research Act” mini-speech, which I could deliver in ten seconds wakened out of a sound sleep—and then, the all important question: what do you do?

 

A young scientist, Andrea Hohmann, was researching a way to ease chronic pain. Too many people’s daily lives are compromised by continual nerve messages of suffering. They must choose between the numbness of medication, and the exhaustion of endlessly dealing with the stress of pain, from low grinding endless irritation, to waves of agony. Dr. Hohmann is working on isolating the pain-relieving factor of marijuana, so that a person could have their pain eased, without the mental confusion of the weed—and without fear of being arrested!

 

On my other side was Kevin McCully, who was working on the relationship between muscle mass and diabetes, and we had just begun to chat when Dr. Ann Kiessling tapped the microphone.

 

As the room quieted, I could not help noticing another generation of Kiessling was behind a huge camera on a tripod, recording the event. I had met Allison Kiessling earlier, standing beside her mom. “My daughter is a visual artist,” said Dr. K. proudly. When they smiled, they looked like twins.

 

But now the meeting began.

 

Though I typed notes frantically, (35 pages, single-spaced) I had the absolute conviction of my own inadequacy: every speaker deserved a book, not a few paragraphs in a column like mine.

 

All I could hope for was a few highlights …

 

“We have been talking about the need for this conference for three years,” said Dr. Kiessling now, “But people like Naomi Kleitman and Wise Young”—she nodded at Wise, just coming in the door, “have been thinking about the problem of spinal cord injury for decades. We wanted to bring the experts together, people like Hans Keirstead, Steven Stice, Jose Cibelli, Scott Whittemore, Ravi Bellamkonda, and Peter Gorman, and try to work together, to isolate the barriers to cure.”

 

I made a mental note that the roster contained folks with very different approaches to cure. Scientists are as different like politicians, and there were liberals and conservatives present—the whole spectrum. Some would say, it is time to move forward; others would caution, not so fast, let’s wait a while! 

 

And everybody has their finger on a different piece of the truth…

 

At the end of the conference, one goal was a position paper, and a video, on the barriers to spinal cord injury paralysis cure, and possible ways to overcome those barriers.

 

The cameras would be shut off in the event proprietary information was to be discussed.

 

Ann Kiessling has been at Harvard for 20 years. Her project, the Bedford foundation, has supported stem cell work which is 100% legal but not fundable by the federal government right now. (Huh, sounds like she is describing California! Our whole state’s approach is 100% legal but not fundable by the federal guidelines!)

 

Benefactors Irv and Diana Naylor (spelling) were thanked—so much work depends on private kindness from far-thinking folks like the Naylors!

 

The first speaker was Dr. Naomi Kleitman.

 

Because she has been with the NINDS since 2001, it would be easy to think of Dr. Kleitman as an administrator only—but this would not be correct. In the packet of information was a paper titled “New Functional electrical stimulation approaches to standing and walking”, and her name was listed last among the authors—and when it comes to scientific papers, last means first, the Principle Investigator (PI) for the work.

 

Also included was an article: “Keeping promises: Translating basic Research into New Spinal Cord Injury Therapies”, in the Journal of Spinal Cord Med. 2004:27:311-318, an overview of different ways to fight paralysis.

 

Waiting in the lobby, I   asked her what she liked best about her job at the NINDS. She thought about it for a moment, and said:

 

“Giving a new scientist tips on how to make their grants have a better chance at acceptance.”

 

But when I asked her if she felt the current budget of the NIH (in my opinion flat-lined) was enough to meet the need, she only smiled and said she could not comment.

 

In her speech, she had to set the stage.

 

She defined the various levels on injury in terms of the spine: for example, an injury in the second cervical (neck, C-2) vertebral area affects breathing.

 

She posed large questions:

 

As all medical procedures contain an element of risk—is the goal of an experiment worth the risk it entails? The safety of the patient always comes first, but at what point is it justified for risks to be taken?

 

And what about the nuts and bolts of fixing damaged spinal cords: what were the goals?

 

Neuroprotection—to save more of the cells that would otherwise be lost.

 

Repairing the nerves.

 

Promoting regeneration.

 

Removing inhibitions (blocking the blockers of nerve repair)

 

Remyelinating (re-insulating) damaged nerves

 

Rehabilitation—retraining those nerve circuits still remaining after the accident.

 

Replacing lost nerves.

 

Building scaffolds for the nerves to grow across, to bridge a gap in an injured spine.

 

So much to consider!

 

Problems like the immune response—if there are cells implanted which the body rejects, considering them foreign, immunosuppressive medication will be needed—perhaps for the rest of the person’s life…

 

She even talked about how to define improvement: not to give a definition, but to pose the question.

 

For a paralyzed person, what is improvement?

 

I remembered an experimental medication called Sygen, which Roman took after becoming paralyzed in 1994.

 

Sygen may have helped Roman as he slowly regained the use of the triceps muscles on the backs of his arms, which strength allows him to transfer himself from bed to wheelchair, and even to drive an adapted vehicle. Sygen had a human trial, but the success level for improvement was in my opinion set too high—one complete improvement level, like regaining the ability to walk—so the trials were judged unsuccessful.

 

To me, that is nonsense.

 

When a person is told, there is no hope—and improvement comes, even a little—that’s huge. Recovery of anything useful is a triumph:  a drink of water in a scorching desert.

 

Important: for anyone considering the risks of personally being involved in a human trial, Dr. Kleitman suggested a website: www.icord.org/iccp.html.

 

(The site contains access to a 40-page document, which is unique, and valuable. I would quarrel with parts of it—its evaluation of the various approaches to cure seems slanted against embryonic stem cell research—but it is definitely must-read material.)

 

Dr. Kleitman's speech was clear, understandable, and useful.

 

If I had to sum it up in one sentence, (and bear in mind this is my interpretation, and I may well have missed her point completely!)  it would be something like:

 

As neurological disorders are complex, so must be our therapeutic targets and strategies: there is no magic bullet.

 

 

 To be continued….

 

Don Reed

 

STEM CELL BATTLES