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CURE Activism: Unlock The Prison Of Paralysis

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    CURE Activism: Unlock The Prison Of Paralysis

    CURE Activism: Unlock The Prison Of Paralysis

    Why Cure Advocacy?

    Without activism:

    1. The United States would still be under British rule;

    2. African Americans would still live in slavery&rsquos chains.

    3. Women would not have the right to vote. (Women's Sufferage Movement)

    4. People with Disabilities would still be institutionalized. (ADAPT)

    Rights and Freedoms are won through activism.

    The time is NOW to fight for:

    The SCI Bill of Rights

    We hold these truths to be self-evident:

    1. All humans are created equal and are entitled to certain unalienable Rights, including Life, Liberty, Independence and the pursuit of Happiness;

    2. Governments are instituted among humankind to secure these rights, and if they fail, it is the Right of the people to alter or abolish such Governments in order to effect Safety and Happiness;

    3. Spinal Cord Injury robs its victims of Liberty and Independence; the Search for a Cure is their Pursuit of Happiness.

    CareCure Members - Let Your Voice Be Heard

    WE MUST:

    1. Deliver the message that SCI can happen to you or a loved one in a heartbeat;

    2. Educate the public and our legislators about the desperate need for a cure;

    3. Spread the news about the many promising cure therapies that need funding;

    4. Work with other organizations to separate fact from fiction in the debate over stem cell therapies

    Advocacy efforts that need our support:

    Christopher Reeve Paralysis Act Bill
    Rally For The Cure
    Coalition for the Advancement of Medical Research
    Become a Stem Cell Research Advocate
    Stem Cell Action Network
    Student Society for Stem Cell Research
    Cures For California
    Suppport Somatic Cell Nuclear Transfer (SCNT)
    Will Ambler Project
    OEG Petition Website
    Purchase Cure T-Shirts

    Other Foundations & Organizations

    Raise funds and awareness for research related to spinal cord injury and other neurological disorders such as those listed below. Links are provided here.

    * International Campaign for Cures for SCI Paralysis
    Member Organizations
    * Australian Spinal Research Trust
    * Christopher Reeve Paralysis Foundation
    * French Institute for Spinal Cord Research
    (Institute Pour la Recherche sur la Moelle Epinièrè)
    * International Spinal Research Trust
    * The Miami Project to Cure Paralysis
    * Paralyzed Veterans of America
    * Rick Hansen Institute
    * The Spinal Research Fund of Australia
    * Alan T Brown Foundation to Cure Paralysis
    * Daniel Heumann Fund for Spinal Cord Research
    * The Kevin Kitchnefsky Foundation for Spinal Cord Research
    * Mike Utley Foundation
    * Paralysis Project of America
    * Spinal Cord Society
    * The Myelin Project
    * Quest for CURE

    Advocacy methods that work - ways that we can make a difference:

    1. Send faxes, e-mails or make phone calls to your state or federal representatives; ask them to support pending legislation or initiatives that support the cure.

    2. Meet directly with legislators to persuade them to sponsor and/or pass bills.

    3. Get involved in or initiate your own petition/signature drive; these require the collection of a specific number of signatures to get a bill on a ballot.

    4. Public awareness campaigns; get involved in walkathons, hand out flyers, purchase clothing, bumper stickers, business cards, create websites, etc., whatever it takes to get the message out there and/or get media attention.

    5. Submit opinion editorials to your local newspaper to express your views regarding policy decisions that affect SCI research.

    6. Make a tax deductable donation or start a community fundraiser to support a SCI research oriented organization or foundation.

    Contact Your Representatives

    Thanks to Jim, Faye, Suzanne, Masmith, Debbie7, Tom Pierce, MK99 and others for bringing this topic together.

    [This message was edited by seneca on 05-04-04 at 11:00 AM.]

    "1. The United States would still be under British rule"

    I don't understand why this is such a big deal - you'd have Tony Blair telling you what to do instead of George Bush - 6 of one, half a dozen of the other LOL


      First International Stem Cell Action Conference, June 5-6, Berkeley, CA:
      CC MEMBERS are INVITED [img]/forum/images/smilies/cool.gif[/img]

      Be part of an event to "SHOW OUR NUMBERS"!!!! Please try to attend the Stem Cell Action Conference being held in Berkley CA., June 5-6.

      The Stem Cell Action conference is NOT a fundraiser but a Powerful Advocacy conference with the goal of promoting therapeutic cloning and ensuring the UN does not ban this promising field of regenerative medicine.

      "Together we stand, divided we fall..."


        Great post Seneca. We not only have to do this for ourselves, but for the future generations that will be SCI.
        "Life is about how you
        respond to not only the
        challenges you're dealt but
        the challenges you seek...If
        you have no goals, no
        mountains to climb, your
        soul dies".~Liz Fordred


          Here is another one to be added to the list at some point, Seneca:

, Student Society for Stem Cell Research

          SSSCR is poised to become a major player consisting of students affecting stem cell research policy for several reasons:

          1. We specifically address stem cell research with clarity of focus as our single issue.

          2. SSSCR promotes and engages in advocacy and involvement with stakeholders. SPUSA on the other hand specifically does not promote advocacy but instead diversity of opinion through thought and discussion. Well talk is o.k. but not for SSSCR we believe in action and want to affect public policy with a specific position to promote.

          3. The SSSCR spirit is dedicated to the patients we believe stem cell research will cure, thus we are proud to build ourselves around patient advocacy and patient unification, ie SCAN membership and local patient support group involvement.

          4. SSSCR aims to be a major educational resource from policy to research in the field by postings of current news and leading scientific journal articles on its website.
          With this said the SPUSA org is a good model to look at and to take notice of some solid features. They started at five universities. They are located in some fine institutions. They have strong leadership. They get Foundation support.

          SSSCR is new and developing, but please visit our website

          "Together we stand, divided we fall..."


            Seneca, here is a third one to be added to our list:

            Become a Stem Cell Advocate link from


            Ensure the Government Supports Stem Cell Research!
            When will we find cures to cancer, heart disease, and Alzheimer's?

            Stem cell research holds enormous promise for curing disease, but our current federal policies are curtailing our ability to move forward with this research.

            Stem cells, which have the capacity to reproduce themselves and to differentiate into different types of tissues, may be the "missing link" that helps us find cures to:

            Alzheimer's disease

            It's time to support more breakthrough medical research. You can make a difference...if your voice is heard. To ensure our government supports stem cell research, simply complete the form to your right.

            "Together we stand, divided we fall..."

            [This message was edited by Faye on 05-08-04 at 11:23 PM.]


              It is very late and am too tired to read details at this time, but one thing I have thought about lately in the realm of Cure Advocacy and Stem Cells is the fact that it seems there are so very many people who are not aware of the fact that there are many different kinds and areas stem cells are taken from, so many have been led or left to believe it is just involving an embryo~
              I would advocate the differences of, with more detail, in this area.
              "I want to make a difference! However small it may be~ as long as it's a positive one, then this is what my life will have been about and I will go knowing I did my best.~ T.


                Here is a statement from the Association of American Colleges:

                Somatic Cell Nuclear Transfer (Therapeutic Cloning)

                Cloning is the creation of multiple copies of a single molecule, cell, or virus. There are many different kinds of cloning, most of which are now commonplace in science. Cloning has allowed scientists to develop powerful new drugs and to produce insulin and useful bacteria in the lab. It also allows researchers to track the origins of biological weapons, catch criminals and free innocent people, and produce new plants and livestock to feed an undernourished world population.

                Somatic Cell Nuclear Transfer (SCNT) or therapeutic cloning involves removing the nucleus of an unfertilized egg cell, replacing it with the material from the nucleus of a "somatic cell" (a skin, heart, or nerve cell, for example), and stimulating this cell to begin dividing. Once the cell begins dividing, stem cells can be extracted 5-6 days later and used for research. The AAMC supports on-going research into SCNT and has endorsed legislation that would allow such research to flourish.

                Reproductive cloning, on the other hand, is intended to create human beings by cloning human embryos. The AAMC and the National Academy of Sciences recommends a legally enforceable ban on all forms of this type of cloning.

                "Together we stand, divided we fall..."


                  Support grows with more information. Support for embryonic stem cell research increases 13 percentage points to 66 percent when people are
                  informed that couples are donating unwanted embryos that otherwise would be discarded. After hearing a more detailed description of embryonic stem cell research and the diseases it can help cure, support grows even more. Overall, three in four (76 percent) voters support stem cell research after hearing the following description: "Embryonic stem cells are special cells that can develop into every type of cell in the human body. The stem cells are extracted from frozen embryos in fertility clinics, donated by couples who no longer want or need the embryo. This process destroys the embryo. These stem cells can then reproduce on their own, creating what is called a 'line' of stem cells that many
                  researchers can work with. Scientists believe that there is a good chance that stem cells can be developed into cures or treatments for
                  diseases such as cancer, Parkinson's ,Alzheimer's, juvenile diabetes,
                  and spinal cord injuries."


                  "Together we stand, divided we fall..."


                    Cure Advocacy supports promising therapies including:
                    - Therapeutic cloning
                    - Olfactory Ensheathing glia cells
                    - Umbilical cord blood
                    - Bone marrow

                    Source: Cure Advocacy brochure

                    "Together we stand, divided we fall..."


                      Here is some educational material on the HOT topic of the Cure forum: OEG

                      BTW OEG cells contain progenitor stem cells
                      Cure Advocacy supports all types of stem cell research.

                      Olfactory tissue covers about 2.5 centimeters (1 cm = .39 inches) of the upper 1-cm surface of each nasal cavity. Integrated into this tissue are bipolar olfactory neurons, which, starting at the tissue's surface, are composed of 1) dendrites, hair-like projections that receive informational molecules; 2) the olfactory knob from which the dendrites are attached; 3) the cell body, containing the neuron's nucleus and metabolic center; and 4) the signal-conducting axon. Receptors on the dendrite surface capture inhaled odor molecules, which, like a key turning a lock, trigger nerve impulses to the brain through the axon.The axons come together to form bundles (fascicles) that are enveloped by olfactory ensheathing cells (OEC's), a special type of glial or neuronal support cell that guides the axon and supports its elongation. The bundles travel to the base of the tissue and cross over to the cranial cavity through a perforated area of bone named the cribriform plate. They then enter the brain's olfactory bulb, a relay station where they make connections with second-order neurons that lead to other brain areas via the olfactory tract.
                      As a simple analogy, visualize an olfactory neuron as a potbellied dachshund with a long tail sticking through a fence hole. The dog's side of the fence represents the nose's olfactory tissue, the tail side the brain's olfactory bulb, and the fence the cranial barrier. Except for the tail, the dog resides on the fence's olfactory-tissue side. The dog's whiskers represent dendrites that are attached to the dog's head (i.e., olfactory knob), its potbelly represents the nucleus-containing cell body, and its long tail represents the axon.
                      When a small fly (i.e., the odor molecule) stimulates the dog's whiskers, his nose twitches, initiating a shake (i.e., nerve impulse) that quickly descends down his body until his tail wags on the other side of the fence. This wagging excites dogs that live on the other side (i.e., second-order neurons), who, in turn, signal the whole neighborhood (i.e., brain, then body).
                      Scientists are excited about olfactory tissue because, unlike spinal cord tissue, it contains so many cells with regenerative potential, including a source of renewable neurons, progenitor stem cells, and remyelinating OEC's.

                      Olfactory Neurons:
                      These are unique in many ways. For example, most nerves are either a part of the central nervous system (CNS) - i.e., brain and spinal cord - or the peripheral nervous system (PNS), which connects organs and extremities to the CNS. Each system's cellular environment is hostile to the other's nerves. For example, injured peripheral nerves will stop regrowing when they hit the spinal cord. However, this classification is ambiguous for olfactory neurons, which are comfortable in both the PNS and CNS.
                      In another example, olfactory neurons are the body's only surface neurons with direct access to the external environment, i.e., the air we breathe. Like all surface cells, they readily replicate and regenerate, turning over every 60 days throughout life. In olfactory tissue, there are always neurons in different stages of neurogenesis. As neurons mature, they migrate from the base to the surface of the tissue and replace mature neurons, which die through apoptosis, a form of programmed cell death.
                      Olfactory Stem Cells:
                      The source of these new neurons is a pool of progenitor stem cells that reside at the tissue's base. Due to their potential to differentiate into cells that can treat neurological disorders, stems cells have been the focus of much research and also controversy because they have often been isolated from fetal tissue, a stigma olfactory-derived stem cells avoid.
                      Olfactory Ensheathing Cells:
                      Axonal regenerative potential is enhanced by OEC's, which 1) although they do not do so with olfactory neurons themselves, produce insulating myelin sheaths around both growing and damaged axons in the spinal cord, 2) secrete various growth-enhancing neurotrophic agents, and 3) produce structural and matrix macromolecules that lay the tracks for axonal elongation. Because of these features, OEC's promote axonal regrowth, including when implanted in areas that normally do not readily regenerate, such as the spinal cord. For example, OEC-remyelinated spinal cord axons have been shown to penetrate the inhibitory glial scar at the injury site, and then to migrate to their correct targets, restoring function.For a severed axon attempting to grow through this glial scar, it is the physiological equivalent of running the gauntlet, in which the clubs preventing the axon's passage are the glial scar's inhibitory molecules. Because of this gauntlet, the truncated axon retreats into safety. So to speak, the implanted OEC's provide an insulating armor that enables the struggling axon to fend off the inhibitory molecular clubs, pass through the gauntlet, and travel back home in a more receptive environment.
                      In addition, although many structurally intact neurons routinely circumvent the injury glial-scar, the majority of them do not conduct because they have been demyelinated. By providing new, conduction-restoring, myelin insulation, OEC's once again come to the rescue.
                      Because only a small amount of functional neurons (10-15%) are needed to regain significant function, olfactory-tissue's regeneration-fostering properties cumulatively portend much promise for SCI.


                      PS please check other threads on the CURE forum for info on the extend of functional recovery in human sci cases, which to date has been rather limited.

                      "Together we stand, divided we fall..."


                        * I want it all to be "unlocked" for everyone who would and could benefit from stem cells, etc., whether it is embryotic or otherwise.
                        * My point is this: First impressions stay with people, especially if it had something to do with a fear of what if (cloning) or a personal belief otherwise (abortion)~
                        * I believe that we need to, in a sense start over with the information in a basic format, as this will fall upon deaf ears or not be truly be seen because of that first impression.

                        [This message was edited by teesieme on 05-09-04 at 12:19 PM.]

                        [This message was edited by teesieme on 05-09-04 at 12:29 PM.]
                        "I want to make a difference! However small it may be~ as long as it's a positive one, then this is what my life will have been about and I will go knowing I did my best.~ T.


                          teesieme, the basics are covered quite well in our brochures, which has been reviewed by Dr. Young. We talk about all kinds of STEM CELLS, INCLUDING ASC AND PROGENITOR STEM CELLS:

                          Originally posted by Faye:

                          Cure Advocacy supports promising therapies including:
                          - Therapeutic cloning
                          - Olfactory Ensheathing glia cells
                          - Umbilical cord blood
                          - Bone marrow

                          Source: Cure Advocacy brochure

                          "Together we stand, divided we fall..."
                          I'm sorry the hype with ESC both in the media and on CC has confused the very people we were trying to reach.
                          Unfortunately, even though the brochures were produced about a month ago, we were not able to distribute them immediately as we had wanted to, because our cureadvocacy site couldn't be launched due to some circumstances that were out of our controle.
                          Hopefully with the distribution of our brochures a lot of misunderstandings will fade.

                          "Together we stand, divided we fall..."


                            Teesieme, let me know if this helps:

                            The Types of Stem Cells

                            There are significant differences among the various types of stem cell research. Each is critically important and must be vigorously pursued. This research includes:

                            1. Adult stem cells, including umbilical cord blood stem cells, and bone marrow stem cells.

                            2. Stem cells derived from excess in vitro fertilized eggs that would otherwise be discarded.

                            3. Stem cells derived from a laboratory procedure known as Somatic Cell Nuclear Transfer (SCNT).

                            4. Embryonic stem cell lines approved by President Bush prior to August 9, 2001 for federally funded research.


                            "Together we stand, divided we fall..."


                              Supporters of Regenerative Medicine

                              Regenerative Medicine, including SCNT, is endorsed by all mainstream science and health organizations including, but not limited to:

                              ALS Association
                              American College of Obstetrics and Gynecologists
                              American Diabetes Association
                              American Foundation for Aids Research
                              American Medical Association
                              American Pediatric Association
                              American Society for Biochemistry and Molecular Biology (ASBMB)
                              American Society for Cell Biology
                              American Society for Microbiology
                              American Society for Reproductive Medicine
                              Arthritis Foundation
                              Association of American Medical Colleges
                              Association of American Universities
                              Association of Professors of Medicine
                              Association of Reproductive Health Professionals
                              Burnham Institute
                              Cancer Research and Prevention Foundation
                              Cedars-Sinai Health System
                              Coalition for the Advancement of Medical Research (CAMR)
                              Christopher Reeve Paralysis Foundation
                              Federation of American Societies for Experimental Biology, including 60,000 US Scientists
                              Foundation for Spinal Cord Injury
                              Genetics Policy Institute
                              Houston Area Parkinson's Society
                              Juvenile Diabetes Research Foundation (JDRF) International
                              Multiple Sclerosis Society
                              Muscular Dystrophy Association
                              National Academy of Sciences
                              National Association for Biomedical Research
                              National Coalition of Cancer Survivorship
                              National Coalition for Cancer Research
                              National Council on Spinal Cord Injury
                              National Health Council
                              National Institutes for Health
                              National Multiple Sclerosis Society
                              National Paralysis Foundation
                              National Spinal Cord Injury Association
                              Parkinson's Action Network
                              Parkinson's Disease Foundation
                              Project ALS
                              Rett Syndrome Research Foundation
                              Sloan-Kettering Institute for Cancer Research
                              Stem Cell Research Foundation
                              Stem Cell Action Network
                              Texas Parkinson's Action Network
                              Texans to Cure Paralysis
                              The American Society of Human Genetics
                              The Endocrine Society
                              The Huntsman Cancer Institute
                              Tourette Syndrome Association, Inc.


                              "Together we stand, divided we fall..."