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Dear Friends, I was going to take notes for you about the Stem Cell Policy Summit, but Steve Meyer has done such a good job I will forward his to you. I gave a speech Thursday at the Institute of Religion and Health and was flattered that Bernie Siegel thought it was so good that he had Baylor print all 10 typewritten pages and included it in the packets that went out to the participants! Date: Sat, 11 Jun 2005 18:36:52 -0000 From: "Stephen Meyer" <[log in to unmask]> Subject: STEM CELL POLICY SUMMIT: STEVE'S JOURNAL FOR FRIDAY JUNE10 I arrived in Houston on Friday afternoon very excited about the prospects of meeting with scientists, researchers and advocates in the fight for cures for Parkinson's disease, Type 1 Diabetes, spinal cord injuries and so many other diseases. I had been in contact with other advocates since the First International Stem Cell Conference in Berkeley last year. I did not realize how huge the Texas Medical Center was. They have 43 institutes for medical research at the center. It is the largest research medical complex in the world. I had heard of the cancer institute but was amazed how much larger the facilities are. Bernie Siegel, the Executive Director of the Genetics Policy Institute, is the organizer of the conference this weekend. Bernie and I met in the lobby of the conference hotel and talked about how far the public perception has progressed since last year's conference. There is an opportunity with this conference to inform more people on the huge benefits of stem cell research for many. Bernie told me about the stellar speakers who would be presenting during the conference. On Friday evening there was a reception for the attendees. There were over 75 stem cell research advocates there. We had numerous discussions on what is happening worldwide in stem cell research and renewed friendships from last year's conference. I got a chance to meet Sabrina Cohen and Susan Faijt who both are confined to a wheelchair due to spinal cord injuries. Both of these ladies are very energetic for the potential of future cures. The networking that took place will help promote stem cell advocacy in the near future. On Saturday morning we will be able to hear an introduction by the famed heart surgeon, Dr. Michael DeBakey. He is truly one of the pioneers in heart surgery in the 20th century. We will also hear a presentation from Dr. William Brinkley who is a renowned Cell Biologist and is the Senior Vice President for Graduate Studies and Dean of Biomedical Sciences at Baylor College of Medicine. Tomorrow will be very exciting listening to the presentations on the research and the politics on stem cell research. ________________________________________________________________________ ________________________________________________________________________ Date: Sat, 11 Jun 2005 22:42:37 -0000 From: "Stephen Meyer" <[log in to unmask]> Subject: STEM CELL POLICY SUMMIT: STEVE' JOURNAL FOR SATURDAY STEM CELL POLICY SUMMIT: SUSTAINING THE MANDATE FOR CURES SATURDAY JUNE 11, 2005 STEVE'S JOURNAL The sessions on Saturday have been extremely interesting. Bernie Siegel, our host, introduced us to Dr. Michael DeBakey who gave us a talk on medical challenges over the last 100 years and that we need to continue to do research in spite of the political environment in which we currently exist. We had a very inspiring talk by Daniel Heumann who was in a terrible car crash just as he was planning to enter college. He described how his hope to go to college was all but dashed in 1985 which was long before the American Disabilities Act. He spoke glowingly of how he talked with Dr Wise Young who was at NYU who told Daniel "We will find a cure for spinal cord injuries." He was very inspiring on the elected officials in Washington who now support stem cell research and how exciting it was when the House of Representatives passed HR 810 recently. Daniel's enthusiasm was truly encouraging despite his handicap. Dr. Brinkley the Dean of the Graduate School of Biomedical Science of Medicine of the Baylor Medical Center talked to us about the biology of stem cells and what has happened in the last decade. The speed of discover in the stem cell arena is moving much faster than the research that took place in the last century for the cure of Polio. Dr. Brinkley described the research in layman's terms which was very helpful for us who are advocates of the research. He told us how difficult it is to do research when you have to have two identical research labs, one for federally funded research and one for private funded research. Our federal government is placing a huge hurdle in front of our researchers. On the panel on Federal issues we heard from Daniel Perry who is with the Coalition for Medical Research (CAMR), Amy Comstock who is with the Parkinson's Action Network, Jennifer Poulakidas and Louis Guenin. For President Bush's second term obviously we will have a hard time increasing funding for embryonic stem cell research considering the President's statements to date. One of the panelists said that considering 70% of voters support stem cell research, some of those who vote against the research will have to answer their constituents the next time they run for office. After lunch we listened to a presentation from Dr. Charles Jennings who is the Executive Director of the Harvard Stem Cell Institute. He described some of the progress that is continued to be made on the research front. He is very encouraging on what will be happening in research in the coming years. During the afternoon session we heard from several panelists discussing what has happened in Texas where there were several bills which would have drastically limited stem cell research. Through a Herculean effort, stem cell advocates including Judy Haley and Beckie McCleery and many other volunteers educated a number of the Texas legislators to help kill the bad legislation. Also on this panel we had Kevin Casey who is the Senior Director of Federal and State Government Relations at Harvard University. Kevin told us about how influential the Catholic church is in Massachusetts and how they discussed the embryonic stem cell research issue with the Diocese of Massachusetts. He told us that the state legislature made a huge effort to understand the issues related to the research. The discussion process really helped educate the process. Harvard opened up their research processes to Gareth Cook who is a Boston Globe reporter who won a Pulitzer prize for his writing on the stem cell issue. Rose Windmiller who is the Director of State Relations and Local Governmental Affairs at Washington University in St. Louis told us about the very conservative climate in the capitol in Jefferson City, Missouri. The legislation there was on the banning of SCNT in Missouri. The lobbying in Missouri was fierce. The legislation was unique nationwide. They engaged the civic and business communities in understanding the legislation to ban the research and the potential negative impact which could result form the legislation. There was a tremendous amount of science education for the public. She said it was virtually impossible to take a blastocyst from SCNT to become a baby. Their efforts took a lot of the wind in the sails of the Pro-Life lobby. The legislation did not pass. They are trying to build an environment for scientists to come to Missouri. They feel that SCNT is a very positive method to find cures. The highlight this afternoon was the presentation by Dr. Woo Suk Hwang who has made a huge impact recently with his research on human embryonic stem cells. He said that cancer therapy is one avenue for stem cell research. He discussed therapeutic cloning and methods for transferring the stem cells to the patients without the normal problems experienced with rejection. He did his preliminary research on cows as a model. They isolated human stem cells from human embryos. Currently the Korean Government bans cloning for human reproduction. The experimental process is very carefully controlled such that no reproductive cloning could happen. They obtained stem cells in seven to nine days. The presentation was very technical with microscopic analysis of the stem cell lines that were created. He discussed several of the problems in the research to date and recommendations for future work. There are still hurdles to get the stem cell discoveries to date to get it into therapy for cures for patients. He expressed his deep thanks to all those who contributed embryos and the researchers who spent considerable time in the research efforts that were made. He expressed his appreciation to the Baylor Medical Center and all those who supported his work. Dr. Gerald Shatten talked to us about the recent discovery of Dr Hwang and how it used to be a concept and how today it is now a discovery. Our friends in Seoul have improved the efficiency to where there is tremendous success with healthy embryos. We are now in June of 2005 and we will be able to take skin scrapings with cells to find cures. We now can have patients donate their own cells for cures. We now can go to the next step for clinical trials on animals. Our friends from Seoul are making tremendous strides in research. He asked the question why are we not working hand-in hand to find cures for some terrible diseases? He expressed his hope that future cures will soon be found. Dr. Wise Young told us that SCNT will probably not cover all the cases for finding cures. It will be very helpful in finding cures, but it is not all inclusive to finding cures. We do not have enough stem cells to meet the demand for the cures. Will we have a lottery to meet the demand for cures? What are we going to do to meet the demand? We are not going to be able to snap our fingers to meet the demand. There is not enough money to create the cells needed to meet the demand for cells. Don't set expectations so high that it will be a failure. Dr. James Battey told us about his work with the National Institutes of Health. He had a very inspiring talk on stem cell therapies in the future. He was very informative on the technical aspects of research done at NIH. It is a very time and labor intensive activity. He told us about the cells that are allowed for federal funding of stem cell research. There is still a lot that is happening with cells created before August 11, 2001 when President Bush set his deadline date. Paul Mandabach who is the president and managing Partner of Winner- Mandebach Campaigns was hired to help Proposition 71 to get passed in California. He told us that the biggest hurdles to overcome were the religious issues and "Why isn't the Federal Government funding this. California has a $10 billion deficit." They did a tremendous studies on the understanding of the voters and what they needed to know to vote for Prop 71. They focused the campaign on HOPE and let the antagonists be the folks who would not provide hope. They stated that California could bridge the research gap. This was a science issue, not a political issue. They did a tremendous amount of advertising and used numerous methods to get the word out. Life is precious and should be preserved through research. He showed us some advertisements used with people who are affected by spinal cord injuries and MS on what possibly could be done to find cures through research. Chad Griffin who is Senior Strategy Consultant at Chad Griffin Consulting, Inc. He told us in more detail how the television media was used in Prop 71. He also said there was also a lot of spin-off media Prop 71 got from celebrities and other spokespeople. You have to be careful on who you chose and how you have them talk about stem cell research. They talked about cures. They stayed on message. They challenged the opposition to get them off message. These are not experts, so you team them with an expert answer detailed questions when they are asked. He showed us two interviews that were held on Good Morning America and the Today Show. You have to stay on message. Don Reed told us that scientists are his heroes. When his son Roman had an accident which left him a paraplegic. He spent a tremendous amount of time getting Prop 71 passed. He said that Prop 71 is under attack. He referred us to www.cirm.ca.gov, www.camradvocacy.org and his address at [log in to unmask] He offered his advice to all who need assistance to help other states pass legislation on stem cell research. He told us about a letter he received from Christopher Reed that said "You will see a day when Roman will walk. We shall prevail." He had a very inspirational talk. It is now almost six o'clock on a very exciting day in Houston at the Baylor Medical Center. I will have another post tomorrow on tonight's awards banquet and the talks to be held tomorrow. Nina P. Brown Texans for Advancement of Medical Research (TAMR), Asst. Treasurer and Founding Board Member Parkinson's Action Network, Texas Coordinator Texas Parkinson's Action Network, President and CEO Houston Area Parkinson Society, Vice President "Circumstances determine our lives, but we shape our lives by what we make of our circumstances." ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn