Here are answers to frequently asked questions about the Myelin Repair Foundation and our research model, as well as general information about multiple sclerosis and myelin.

Myelin Repair Foundation and the Accelerated Research Collaboration™ Model

What is the Myelin Repair Foundation (MRF)?

• The Myelin Repair Foundation is a non-profit medical research foundation dedicated to accelerating the discovery and development of effective treatments for millions suffering from multiple sclerosis.
• MRF supports a collaboration of pre-selected scientists who have agreed to jointly develop and conduct experiments that will lead to targeted myelin repair discoveries.
• MRF shares its revolutionary research model with all other disease research organizations, enabling rapid discovery of treatments and cures for other diseases.

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How is the MRF Accelerated Research Collaboration™ different from the traditional model of medical research?

• In the traditional model for medical research, individual scientists focus on narrow fields of interest, often choosing specific projects based personal intellectual curiosuty and/or the availability of funding rather than any overall desired research outcome.
• Traditional medical research is a highly competitive business. Few scientists share information until they have completed their experiments and published the results of their work. As a result, the cycle time from concept to discovery to publication ranges from four to six years.
• There are limited incentives for scientists to patent and commercialize discoveries.
• Without patent protection of discoveries, the financial risk for pharmaceutical companies to undertake drug development and clinical trials is often prohibitive. For complex diseases like multiple sclerosis these factors have slowed progress toward treatments.
• Acknowledging the limitations of the traditional model of medical research, the MRF has assembled a world-class team of research scientists at five separate universities and provided them with a collaboration infrastructure—funding, a shared, outcome-focused research plan, membership and technology transfer agreements with the participating universities, and business management support—that allows them to focus on their core expertise.
• Further by protecting the intellectual property, the financial risks to pharmaceutical companies are significantly reduced thereby increasing their interest in undertaking new drug development and clinical trials.

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How does MRF ensure the highest-quality science with near-term practical benefit?

• MRF employs a comprehensive review process for identifying world-class scientists, designing a research plan, selecting experiments, and monitoring the progress of those experiments.
• MRF ensures accountability of the research process through continuous management oversight as well as regular, on-going peer review of research results and their relevance to achieving benefits to MS patients.
• No traditional model of medical research has this level of on-going review and management oversight from its funders.

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Who are the participating scientists?

MRF Principal Investigators include

• Ben A. Barres, M.D., Ph.D., Stanford University, Palo Alto, CA
• Robert H. Miller, Ph.D., Case Western Reserve University, Cleveland, OH
• Stephen D. Miller, Northwestern University, Chicago, IL
• Brian J. Popko, Ph.D., University of Chicago, Chicago, IL

Each of the principal investigators brings expertise that is complimentary to the other members of the team.

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How is MRF’s Accelerated Research Collaboration™ model accelerating treatments and cures for all diseases?

• Though MRF developed its Accelerated Research Collaboration™ model to speed treatments for MS, its research model is completely replicable in research on other diseases. To date, more than 40 different medical research organizations have been introduced to the model and its potential use in speeding the time to drug discovery for all diseases.
• What MRF’s scientific team learns about myelin and myelin repair may provide important clues for the understanding and treatment of other neurological diseases.
• The research tools being developed for advancing myelin repair research may also find applications in the study of all neurological diseases, including Alzheimer’s, autism, depression, Parkinson’s, brain cancer, stroke and others.

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Is the collaboration working?

• The short answer is yes, early results, including the discovery of drug targets, therapeutic candidates and research tools have exceeded all of our expectations. MRF has also initiated a dynamic patent portfolio based on these discoveries.
• To MRF’s knowledge, no one else has exceeded the speed and volume of results in identifying drug targets, developing research tools and filing patents.
• MRF is proactive in itemizing results in a business-model matrix and welcomes others within the field to compare our results.

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How will MRF move its discoveries into clinical trials?

• By patenting discoveries, MRF is encouraging pharmaceutical companies who may have an interest in further drug development and clinical trials.
• MRF has had preliminary discussions with a number of pharmaceutical companies regarding how to move MRF discoveries into drug development.
• MRF will grant licenses to one or more pharmaceutical companies based on each company’s ability to expedite the movement of validated targets forward into drug development and clinical trials so that patients will benefit as quickly as possible.

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When will drug development and clinical trials begin for myelin repair treatments?

• Drug development and clinical trials will be conducted by pharmaceutical companies who have licensed MRF discoveries. Typically, the drug development process takes four to five years and, if successful, leads to clinical trials.
• The rapid progress of our scientific team leads us to believe that we may have a drug target entering drug development as early as 2008.
• For regular updates on research and progress toward drug development and clinical trials, please register. A database of federally- and privately-supported clinical research in human volunteers is available at http://www.clinicaltrials.gov.

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Who supports the Myelin Repair Foundation?

• MRF is supported by grants from foundations and corporations as well as generous donations from individual supporters. Among our foundation and corporate supporters are the Robert Wood Johnson Foundation, the Wayne and Gladys Valley Foundation, Biogen Idec and Omidyar Network.
• Approximately one-half of all MRF supporters have NO direct tie to MS but are supporting the innovative research model and the potential it holds for speeding the time to discovery of treatments for all diseases.
• MRF supporters can be guaranteed that their donations will support only research.
• Many MRF supporters contribute to more than one MS organization.
• Revenues generated from the future licensing of our patents will be rolled back into research programs at the participating universities and MRF.

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Can I apply for funding from the Myelin Repair Foundation?

• MRF does not accept proposals for funding. Instead, from time to time, MRF may invite proposals from qualified scientists whose expertise is required to accomplish our goal of identifying myelin repair drug targets that will lead to treatments for MS.

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How can I find out more about the Myelin Repair Foundation?

• Explore the MRF web site.
• Call the Myelin Repair Foundation at 408-871-2410 or toll-free at 1-877-TOFIXMS.
• Email us at info@myelinrepair.org.

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How can I help speed the development of treatments for disease?

• Tell a friend about MRF and its potential to speed treatments for MS and all other diseases.
• Register at the MRF web site for regular updates on research progress. http://www.myelinrepair.org/register.shtml
• Donate to the Myelin Repair Foundation either online or mail checks to: 18809 Cox Avenue Suite 190, Saratoga, CA 95070. All gifts are tax deductible according to law.
• For more information, please call us at 408-871-2410 or toll-free at 1-877-TOFIXMS, or email to info@myelinrepair.org.

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Multiple sclerosis and myelin

What is multiple sclerosis (MS)?

• Multiple sclerosis is a chronic unpredictable neurological disease affecting 2.5 million people worldwide. MS can cause blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, stiffness, bladder problems and blindness.
• Though most people with MS are diagnosed between the ages of 20 and 40, the unpredictable physical and emotional effects can be life long. The progress, severity, and specific symptoms of MS vary greatly from person to person.
• Because of the complexity of the disease, the cause and pathology of MS are still not known. As a result, scientists cannot predict when a cure for MS will be available. In fact, to date, no cure has been found for any neurological disease.

Read more about multiple sclerosis research.

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What causes symptoms in MS?

• MS symptoms result from inflammation and breakdown of myelin, the protective coating surrounding nerve fibers of the central nervous system (the brain and spinal cord). Myelin is often compared to the insulating material around an electrical wire; loss of myelin interferes with the transmission of nerve signals. The loss of myelin is referred to as demyelination. MS is one of several demyelinating diseases.
• Myelin is destroyed and myelin repair is prevented by the formation of scars of hardened “sclerotic” tissue. These are called plaques, and they can appear in multiple places within the brain and spinal cord, hence the name multiple sclerosis.

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How is MS treated?

• There are a variety of treatments available that may reduce some symptoms of MS in some MS patients. For treatment options, consult a qualified neurologist.

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Why did MRF choose to focus on myelin repair?

• Demyelination is common to all forms of multiple sclerosis. Repairing the myelin damaged by MS will improve signal transmission in the central nervous system and reduce the symptoms of the disease. MRF is the first multiple sclerosis research organization to undertake a research plan focusing on myelin repair.
• Scientists have recently discovered that just as other cells in the human body renew and replace themselves, the cells of the brain and spinal cord also renew themselves (though at a much slower rate). Though multiple sclerosis blocks the body’s natural ability to repair myelin, it is this renewal process that leads scientists to believe that myelin repair may be possible.

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