The 2008 World Stem Cell Summit offered attendees an abundance of information and reason to hope.
By Tiffiny Carlson
If you’ve ever wanted to be infused with hopeful intelligence about spinal cord injury research, attend the World Stem Cell Summit. I was able to attend this annual event last September and after 15 years of being paralyzed, what I heard at World Stem Cell Summit was music to my soul.
Madison, Wisconsin, where this year’s Summit was held, is a mere 4-hour drive from my hometown of Minneapolis. I was able to snag a media pass and attended as both a journalist and a patient advocate.
Put on by the Genetics Policy Institute every fall, the Summit gathers stem cell researchers and scientists, patient advocates, and business people involved in the stem cell industry, all around the globe, to learn, share, and network. A multitude of panels, luncheons, break-out sessions, and vendor booths are just a sliver of what occurs during the event.
The experience of being in the same vicinity as some of the most intelligent people in the world is something every human being should have. Not only is it awe-inspiring, but hearing them speak fills you with hope. I was left with a newfound belief that a cure for paralysis will indeed come to pass.
Panel Discussions
The first panel I attended, on day one of the Summit, was International Perspectives: Collaboration Opportunities and the Importance of Stem Cell Banking. This panel focused on the importance of banking stem cells, whether they’re harvested from frozen embryos or cord blood. Several scientists from stem cell banks around the globe partook in the discussion, giving their own personal experiences on banking stem cells in their home countries.
Stephen Minger of King’s College London, Marilyn Robertson of the Scottish Stem Cell Network, Glyn Stacey representing of the UK Stem Cell Bank, and Derek Hei of the U.S. National Stem Cell Bank each gave presentations.
On Day 2, I attended Stem Cells and Diseases II: Concurrent Sessions/Spinal cord injury and multiple sclerosis. It began with patient advocate Sabrina Cohen, of the Sabrina Cohen Foundation for Stem Cell Research Foundation (www.sabrinacohenfoundation. org), giving a first-person experience of her injury and how it affects her life.
Timothy Coetzee of Fast Forward, LLC, spoke next. Fast Forward is dedicated to bringing effective treatments for MS drugs to the public faster. Next was Ian Duncan of the University of Wisconsin-Madison. UW-Madison is a leader in stem cell research and was the first lab in the world to coax stem cells from human embryos.
Considered a “whiz kid” in the field of SCI research, scientist Hans Kierstead of the University of California-Irvine Research Center, spoke next. While his presentation contained a lot of jargon that went over my head, it was enthralling to listen to him discuss his current work and view slides of stem cells that he and his team have been able to grow into motor neuron cells. Dr. Kierstead ended the presentation by adding he’s “extremely optimistic” and believes SCI is one of the conditions most amendable to being aided by stem cells.
Break-Out Session
Probably the most famous scientist in the field of SCI research, Dr. Wise Young of Rutgers University, spoke last. His main focus in 2009 is the China Spinal Cord Injury Network (which he founded). He hopes China SCI Net will be able to begin their human trials sometime this year. But Young added that China is just as stringent, if not a more difficult place to get approval for embryonic stem cell research. There are more governmental layers, he noted, unlike the sole layer here in the USA—the FDA.
Afterwards, I attended a crowded break-out session with several scientists, including Dr. Wise Young, where the discussion on utilizing stem cells to improve neurological conditions was continued. Dr. Young discussed his belief that an actual “cure,” not just therapies, will someday be developed. Most other SCI researchers disagree and believe that a series of treatments will be the answer.
Amanda Boxtel, an Australian woman who went to India for a controversial stem cell treatment conducted by Dr. Geeta Shraff, was also discussed. We were shown a fascinating “before” and “after” diagram, which showed the return she’s allegedly received. Unfortunately, Boxtel wasn’t in attendance to speak for herself.
Many of the scientists who were present expressed doubt in the validity of Dr. Shraff’s treatments, mainly because she keeps everything cloaked in secrecy. Dr. Shraff doesn’t share the details of her studies with the international scientific community, which is required if any stem cell scientist wants to be taken seriously.
One of the most poignant things I witnessed while attending this break-out session was a father from New York City who passionately shared his son’s story with the researchers. A fireman and a devout Catholic, he said, he has a son who was born with a rare neurological condition. Despite the Church’s stance on embryonic stem cells, he and his wife decided to allow their son to be involved in an embryonic stem cell study. He claimed the treatment was somewhat successful and he brought pictures of his son, before and after, as proof.
Networking Opportunities
At the end of the main hall, dozens of posters were on display that were created by patient advocates (including Josh Basile of Determined2Heal.org). The organizers of the summit asked advocates to make posters that shared their story and in exchange, they received free admittance.
On Day 2, lunch was no ordinary occasion. It was dubbed a “Lunch with Experts,” where, depending on the table you sat at, you were seated with experts who discussed issues apropos of stem cells. At my table, which was called “Hopes for the Next Presidential Administration,” I had the fortune to sit with Professor Alta Charo of UW-Madison. Charo was a member of President Clinton’s National Bioethics Advisory Commission and teaches law and bioethics. The discussion was lively and full of hope for the (new) Obama Administration.
Another notable person I met was Kurt Christenson, a C-6 quadriplegic, who owns Protective Disposables LLC, a biomedical company that sells discounted stem cell research supplies. He was recently injured and is an unstoppable businessman. After his injury, he changed the products his wholesale company sells to discounted stem cell research lab supplies, and now sells to labs worldwide.
I brought home from the summit a lot of good information and stimulating memories, but my two main takeaways were: 1) I realized that actual therapies for SCI will someday happen, though they are still a long way off; and 2) I discovered that the theories among the researchers are still very varied. No one can yet say what the best method to use stem cells will be. The good news? These scientists are working relentlessly to figure what that answer may eventually be.
Links of Interest
-Web casts of the 2008 World Stem Cell Summit panels: www.worldstemcellsummit.com
-Genetics Policy Institute: www.genpol.org
-UC-Reeve Irvine Research Center: www.reeve.uci.edu
-China SCI Net: www.chinasci.net
Tiffiny Carlson is a regular contributor to Action.
