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Our mission is to find the cause and ultimate cure for multiple sclerosis by funding scientific research grants through The Nancy Davis Center Without Walls program, a nationwide collaboration of the top seven MS research centers in the United States. We will win the Race to Erase MS!

FALL 2006 Volume 6 / Issue 1 INSIDE Disco Fever to Erase MS The RACE

Memory and MS...Page 3

Genetech and Biogen IDEC announce Rituxan...Page 3

MS Roundtable...Page 5

Center Without Walls Update...Page 6

Center Without Walls Clinical Trial Summary...Page 8

Disco Fever Photo Gallery...Page 10-11, 16-17

Health Advisory...Page 12 Jason Davis, Sister Sledge, David Foster, Suzanne de Passe, Tom Arnold, Lynn Palmer, Nancy Davis, Tommy Hilfiger, Barbara Davis, Kool & The Gang MS and Genetics...Page 13 It was a celebration and good times to remember as Co-Chairs Nancy Davis and Tommy Hilfiger Hopkins Stem Cell welcomed special celebrity presenters Ryan Seacrest, Randy Jackson, Anne Heche and Sharon Project...Page 14 Osbourne to the 13th Annual Race to Erase MS event, themed "Disco Fever to Erase MS", on Friday, May 12th at the Hyatt Regency Century Plaza. “Lean on Me” by Nancy Davis...Page 15 The event raised over 2.5 million dollars for multiple sclerosis research thanks to a most gener- Transverse Myelitis...Page 18 ous group of supporters. Tommy Hilfiger Corporation, American Airlines, Serono and the Hyatt Regency Century Plaza all contributed to the tremendous amount of funds raised to support MS Crossword Puzzle...Page 19 research. Once again supporters from the entertainment and music industry as well as leaders from the world of business and celebrated guests from all over the world were in attendance at this star-studded evening.

Contact Us The highlight of the evening included an exclusive celebrity fashion show featuring one-of-a- The RACE to Erase MS, kind disco inspired designs by Tommy Hilfiger. Lisa Rinna took the stage with her dancing part- The Nancy Davis Foundation ner, Louis van Amstel, from “Dancing with the Stars” and kicked off the evening with a 70’s for Multiple Sclerosis inspired number. Spectacular live performances by musical legends and Grammy Award win- ning artists Natalie Cole, Macy Gray, Sister Sledge and Kool & The Gang rocked the house and 1801 Ave of the Stars Suite 1400 had everyone dancing in the aisles. The show was produced by Suzanne de Passe, with David , CA 90067 Foster as the musical director.

Phone: 310.440.4842 Tom Arnold, Byron Allen and Brooke Burns raised much needed funds as celebrity auctioneers Fax: 310.471.4975 at the night's exciting live auction. The high-energy auction featured an extraordinary list of lux- www.erasems.org ury items including a private dance lesson with Drew Lachey and Cheryl Burke from “Dancing (RACE continued on Page 13) 14819_2006Race2Erase.qxd 11/2/06 1:13 PM Page 2

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Message from Nancy Davis The RACE to Erase MS, The Nancy Davis Foundation for President and Founder Multiple Sclerosis

"When I was first diagnosed in 1991, Multiple Sclerosis was BOARD OF DIRECTORS a mystery disease that no one truly understood. Doctors were unable to arm me with the information that a newly diag- Nancy Davis, President nosed patient needed, or tell me how MS would affect my Tom Arnold Barbara Davis family and my life. Dana Davis Steve Farber, Esq. Teri Garr It's amazing how the landscape has significantly changed Marc Gurvitz over the last fifteen years. At that time there were no drugs Stephen Hauser, M.D. Tommy Hilfiger on the market to help stop the progression of this disease. Claudia Curry Hill Miraculously, there are now six with FDA approval with a seventh very near approval Roy Hilton March Lynn Palmer and others coming through the pipeline in the very near future. We are now so much Montel Williams closer to finding a cure. Hopelessness has been replaced by hopefulness.

THE CENTER WITHOUT WALLS Through our Center Without Walls program, there are so many more exciting and SCIENTIFIC ADVISORY BOARD

promising new therapies on the horizon. Our seven centers that make up the presti- Jack P. Antel, M.D. gious consortium of the Center Without Walls program have made extraordinary McGill University, Montreal, Canada, Dept. breakthroughs in a short amount of time . This expansion of minds working towards of Neurology and Neurosurgery a cure gives me confidence that we will win this RACE to Erase MS in the next decade George S. Eisenbarth, M.D., Ph.D. with the diligent work of our Center Without Walls physicians and the continued sup- University of Colorado, Health Sciences Center port of the many generous and caring contributors to this cause." Brian Kotzin, M.D. IN University of Colorado, Co-Head of Clinical Immunology

THE CENTER WITHOUT WALLS SYMPTOMS OF MS? RESEARCH CENTERS Multiple sclerosis causes a large variety Dennis N. Bourdette, M.D. Oregon Health Sciences University of symptoms. The most common symp- In loving memory of toms are: Peter A. Calabresi, M.D. one of our beloved John Griffin, M.D. • NUMBNESS OR TINGLING and dedicated Johns Hopkins Hospital • UNUSUAL FATIGUE, WEAKNESS AND EXHAUSTION members of our Stephen Hauser, M.D. • VISION PROBLEMS Board of Directors University of , •LOSSOFMEMORY Richard Rudick, M.D. • POOR COORDINATION OR Lenny Florence The Mellen Center, Cleveland, Ohio DIFFICULTY WALKING • BLADDER PROBLEMS 1932 - 2006 Stephen G. Waxman, M.D., Ph.D. Yale University School of Medicine • SLURRED SPEECH No two persons with MS will necessarily We will always remember his Howard Weiner, M.D. Brigham & Women’s Hospital, Harvard display the same symptoms, making it kindness and deep sense of difficult to predict the course of the dis- charity and how he always Leslie Weiner, M.D. ease for an individual patient. Symptoms University of Southern California may occur suddenly and remain constant, cared so deeply about helping or may continue in a progressive or those less fortunate than Emmanuelle Waubant, M.D., episodic pattern. The uncertainty and himself. CWOW Medical Director unpredictability of MS makes living very University of California, San Francisco difficult for the victims, their families and friends. 14819_2006Race2Erase.qxd 11/2/06 1:13 PM Page 3

FALL 2006 PAGE 3 Genentech and Biogen Idec Announce Memory and MS Positive Results from Phase II Trial of By Dr. Dennis Bourdette Rituxan in Relapsing-Remitting MS Oregon Health Sciences University MS attacks nerve fibers in the brain as South San Francisco, Calif. and Cambridge, Mass. -- August 28, 2006 -- Genentech, well as the spinal cord. So it is not too Inc. (NYSE: DNA) and Biogen Idec, Inc. (Nasdaq: BIIB) announced today that a surprising that about half of the people Phase II study of Rituxan® (Rituximab) for relapsing-remitting multiple sclerosis with MS experiences changes in the cog- (RRMS) met its primary endpoint. The study of 104 patients showed a statistically nitive function. These include difficulties significant reduction in the total number of gadolinium enhancing T1 lesions observed with concentration, short term memory, on serial MRI scans of the brain at weeks 12, 16, 20 and 24 in the Rituxan-treated new learning, word and name finding and group compared to placebo. Genentech and Biogen Idec will continue to analyze the decision making. While people with MS study results and will submit the data for presentation at an upcoming medical meet- do not become demented like someone ing. "These initial results exceeded our expectations," said Hal Barron, M.D., with Alzheimer's disease, their cognitive Genentech senior vice president, development and chief medical officer. "Showing a problems can interfere with their ability significant benefit at 24 weeks in this small Phase II trial supports our hypothesis that to remain employed and function social- selective B-cell targeted therapy may play an important role in the treatment of MS." ly. Currently there are no treatments that improve cognitive performance among Rates of overall adverse events and serious adverse events were comparable between people with MS. But scientists who are the two treatment groups. Serious infectious adverse events occurring in Rituxan- part of the Nancy Davis Center Without treated patients included gastroenteritis and bronchitis. The overall rates of infection Walls think an ancient herb may prove to were comparable among the two treatment groups with an increase in the rates of be useful for treating cognitive difficul- nasopharyngitis, upper respiratory tract infections, urinary tract infections and sinusi- ties in people with MS. tis in the Rituxan-treated patients. There were more first infusion-related reactions with Rituxan, the majority of which were mild to moderate and were generally The Ginkgo biloba tree is a "living fossil" reversible with medical intervention. The companies continue to monitor the long- and its leaves have been used for many term safety of Rituxan treatment. centuries as a Chinese medicine. Extracts from ginkgo contain anti-oxidants and About the Study other substances that can affect chemicals This Phase II randomized, double-blind, parallel-group, placebo-controlled, multi- within the brain involved with memory center study was designed to evaluate safety and efficacy of Rituxan in adults with and concentration. In Oregon about 20% RRMS. A total of 104 patients at 48 sites in the U.S. and Canada were randomized to of people with MS take ginkgo and many receive either a single treatment course of Rituxan or placebo. Gadolinium-enhancing report that it helps them. Because of this, lesions visible by MRI scans were assessed at 12, 16, 20 and 24 weeks. Patients will investigators at the Oregon Health & continue to be followed for 48 weeks. Science University MS Center conducted a clinical trial of ginkgo in MS. About Rituxan In this study, supported by the NDCWW, Rituxan is a therapeutic antibody that targets and selectively depletes CD20-positive 39 people with MS and cognitive com- B-cells without targeting stem cells or existing plasma cells. In addition to RRMS, plaints underwent six tests of cognitive Rituxan is being studied in primary progressive MS, for which there is currently no performance. They were then randomly FDA-approved therapy. Rituxan is being studied in other autoimmune diseases with assigned so that 20 received ginkgo (120 significant unmet medical needs, including systemic lupus erythematosus, lupus mg twice a day) and 10 received placebo nephritis and ANCA-associated vasculitis. Rituxan, discovered by Biogen Idec, first (given twice a day). The study was received FDA approval in November 1997 for the treatment of relapsed or refractory, "blinded," which meant that the subjects low-grade or follicular, CD20-positive, B-cell non-Hodgkin's lymphoma. It was also participating in the study and the investi- approved in the European Union under the trade name MabThera® in June 1998. In gators did not know who was receiving addition, Rituxan received FDA approval in February 2006 for the treatment of dif- ginkgo and who was receiving placebo. fuse large B-cell lymphoma (DLBCL) in combination with CHOP (cyclophos- After three months the MS patients had phamide, doxorubicin, vincristine and prednisone) or other anthracycline-based their cognitive performance was re-test- chemotherapy regimens in previously untreated patients, as well as in combination ed. At the end of the study, the investiga- with methotrexate to reduce signs and symptoms in adult patients with moderately-to- tors found that the people with MS taking severely active rheumatoid arthritis who have had an inadequate response to one or ginkgo reported improvement in their more tumor necrosis factor antagonist therapies. 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PAGE 4 FALL 2006

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My Very Necessary Medical I.D. Card™ fits easily in your wallet and contains your Phone 310-440-4842 most essential medical information in case of an emergency when you can't speak for yourself. Our service allows you to store and retrieve your medical and legal records Fax 310-471-4975 and will assist in reducing healthcare inefficiencies, limit the possibility of medical errors, and ensure one's legal wishes. It will empower the THE FACTS Member by making them more active partners in the managing and of Multiple Sclerosis: maintenance of their own healthcare records. We have developed a safe MS STRIKES AT LEAST and secure method to organize, TWICE AS MANY store, and immediately access one's WOMEN AS MEN important medical information and legal wishes from anywhere in the world by using the internet or calling one of our customer service associates 24/7. MS IS EXTREMELY UNPREDICTABLE NEVER LEAVE ANYTHING TO CHANCE As a member of My Very Necessary Medical I.D. Card™, you can create your own MS STRIKES MOST OFTEN personal healthcare profile. Organize and update your healthcare and legal records. When you need life saving medical information in an instant it can be seen on the front BETWEEN AGES 20 TO 50 of the Medical ID Card, or view your information from the Emergency Medical Records login section of the website. My Very Necessary Medical I.D. Card™ has MS CAN CRIPPLE partnered with AccessMyRecords.comSM to offer you this valuable service. MS IS THE MOST COMMON HOW DO I GET MY CARD? Please visit our website at www.vnmedical-idcard.com. You can see the full range of CAUSE OF services My Very Necessary Medical I.D. NEUROLOGICAL Card™ has to offer. Just click on the Join Now DISABILITY button and fill out a simple form. (EXCLUDING TRAUMA) ARISING IN EARLY TO Information Hotline: MIDDLE ADULTHOOD 800-796-6431 14819_2006Race2Erase.qxd 11/2/06 1:13 PM Page 5

FALL 2006 PAGE 5

The Center Without Walls The Center Without Walls ROUNDTABLE FORUM -- May 13, 2006 Collaborating Physicians

Once a year the Race to Erase MS provides a special a unique opportunity for the pub- Dr. Jack Antel, lic to hear the Nancy Davis Center Without Walls doctors discuss the newest and most Montreal Neurological Hospital promising information available for people with multiple sclerosis. On May 13, 2006 Dr. Rob Bakshi Brigham & Women's Hospital the doctors from the Center Without Walls met for the annual MS Round Table dis- Dr. Bruce Bebo, cussion at the Hyatt Regency Century Plaza. Guests included individuals with MS Oregon Health Sciences seeking support and information on the latest findings to treat the disease as well as Dr. Guy Buckle, Harvard families and friends of those suffering from MS. Brigham & Women's Hospital Dr. Michael Carrithers, Yale University The doctors on the panel included our main investigators in neurology from the Center Dr. Tanuia Chitnis, Harvard Without Walls, Dr. Dennis Bourdette, Dr. Jeffrey Cohen, Dr. Stephen Hauser, Dr. Brigham & Women’s Hospital Adam Kaplan, Dr. Emmanuelle Waubant, Dr. Stephen Waxman, Dr. Howard Weiner Dr. Jeffrey Cohen, Cleveland Clinic and Dr. Leslie Weiner, as well as Nancy Davis, Attorney Mark Barondess and Claudia Dr. George Eisenbarth, Curry Hill, all of whom are MS patients. University of Colorado, Health Sciences Center We would like to thank our sponsors Genetech, Hyatt Regency Century Plaza, Le Pan Dr. Elizabeth Fisher, Cleveland Clinic Quotidien and Fiji Water for their invaluable donations towards this very important Dr. Bob Fox, educational opportunity which was free and open to the public. If you were unable to Cleveland Clinic attend our symposium but would like a copy of the program on DVD, please contact Dr. Suzanne Gauthier, Harvard (310) 440-4842. Brigham & Women’s Hospital Dr. Claude Genain, Please make sure to Save The Date for next year, University of California, San Francisco Dr. Wendy Gilmore, April 14, 2007 at the Hyatt Regency Century Plaza University of Southern California Dr. Bruce Gold, Oregon Health Sciences Dr. Douglas Goodin, University of California, San Francisco Dr. Charles Guttman, Harvard Brigham & Women’s Hospital Dr. Halina Hoffner, Oregon Health Sciences Dr. Norman Kachuck, University of Southern California Dr. George Eisenbarth, Dr. Dennis Dr. Stephen Hauser Roundtable Question and Answer Dr. Sanjay Keswani, Bourdette, Dr. Emmanuelle Waubant and Nancy Davis Session with Panel Johns Hopkins Dr. Samia Khoury, Harvard Brigham & Women’s Hospital Dr. Brian Kotzin, Amgen Dr. Albert Lo Yale University Dr. Brett Lund, University of Southern California Dr. Jorge Oksenberg, University of California, San Francisco Dr. Daniel Pelletier, Dr. Adam Kaplin, Dr, Jeff Cohen, Dr. Howard Weiner, Dr. Stephen Dr. Peter Calabresi with University of California, San Francisco Hauser, Dr. Leslie Weiner, Claudia Curry Hill, Dr. Dennis Bourdette, Dr. Jeff Cohen and Colleague Dr. Jana Preiningerova, Dr. Emmanuelle Waubant, Nancy Davis, Yale University Mark Barondess and Dr. Stephen Waxman Dr. Richard Ransohoff, Cleveland Clinic Dr. Bruce Trapp, Cleveland Clinic Dr. Arthur Vandenbark, Oregon Health Sciences Dr. Ruth Whitham, Oregon Health Sciences Dr. Scott Zamvil, University of California, San Francisco

Ms Roundtable Panel Dr. Emmanuelle Waubant with Dr. Leslie Weiner Amy and David Nader and Dr. Stephen Waxman 14819_2006Race2Erase.qxd 11/2/06 1:13 PM Page 6

PAGE 6 FALL 2006 The Center Without Walls: Medical Research Update Promising new breakthroughs at each center bring hope to those with MS! The Nancy Davis Center Without Walls (NDCWW) is made of seven groups with complementary expertise in MS research. The NDCWW exchanges scientific information and collaborates at multiple levels. Several new and exciting scientific achievements in the past year have continued to fuel the NDCWW’s commitment to find a cure for multiple sclerosis. Scientific meetings provide an open forum for discussion and presentation of novel ideas and findings. Centers with specific expertise provide valuable support to others, with each having a unique background. This constant exchange process is nurturing an outstandingly rich research activity. During these meetings, 30 key investigators of the 7 institutions shared information prior to publication. The specific scientific accomplishments of individual Centers are contained in the individual reports. The highlights are presented below. Cleveland Clinic, that spinal volume is correlated to MS munication pathways and hope to take Director, Richard Rudick, M.D. disability and will become a valuable advantage of the protective signals to new outcome to monitor the effect of devise axon protective therapies. promising MS drugs. Finally, the team is The Mellen Center has investigating the molecular mechanisms found that immune com- Oregon Health Sciences that underline the lack of remyelination municating molecules and neuro-regeneration that occurs in University called chemokines may MS. Identifying such inhibitory mecha- Director, Dennis Bourdette, M.D. be important in the brain nisms will allow to reverse lack of tissue repair process. Certain repair. The team at OHSU dis- chemokine receptors are essential to covered that a vaccine development of brain inflammation in made from the T cell the animal model of MS. Identifying Johns Hopkins Directors, Peter Calabresi, M.D. receptor for the treatment which of the chemokine receptors should of MS turns on a special be targeted will result in the development and John Griffin, M.D. type of protective white of novel treatments. The team at the blood cells, called Treg cells that are Mellen Center has also reported that Permanent disability in deficient in people with MS. This vac- women immune system is strongly MS is thought to occur cine help restore the balance of the skewed towards damaging inflamma- because of irreversible immune system in patients with MS. The tion-causing chemicals, resulting in damage to the nerve team also found that a special class of many more women than men reaching a “wires” called axons. The drugs called non-immuno-suppressive “threshold” of auto-immune diseases goals of the team at Johns immunophilin ligands can have neuro- such as MS. This dramatic skewing is not Hopkins is to define the protective effects in the animal model for observed with non-MS-relevant proteins, mechanisms by which MS. Finally, they have engineered pro- nor is it seen between healthy women axon injury occurs in MS teins, called recombinant T cell ligands and men. and develop imaging bio- that in animal models of MS turn delete- markers of axon and rious white blood cells into harmless Harvard Brigham and myelin injury. They are players. The team will translate this Women’s Hospital, using classical inflamma- exciting finding into a clinical trial in Director, Howard Weiner, M.D. tory animal models of MS as well as patients with MS this year in collabora- some novel non-inflammatory models in tion with USC. which the myelin is genetically absent or The team at Harvard is chemically altered. These are providing analyzing the linkage of information as to how axons that have certain blood markers lost their myelin die, e.g. because they with MS activity and are transected by immune cell derived response to MS drugs. enzymes, or because they have lost The team has also devel- growth factor support from the myelin. oped new MRI techniques to measure The team at Johns Hopkins has found out the volume of the spinal cord. They hope that this occurs through different com- 14819_2006Race2Erase.qxd 11/2/06 1:13 PM Page 7

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University of California, Yale University TYSABRI clinical trial data; revised Director, Stephen Waxman, M.D. labeling with enhanced safety warnings; San Francisco and a risk management plan (TOUCH Director, Stephen Hauser, M.D. Prescribing Program) designed to inform The goal of research at the physicians and patients of the benefits Yale Center is to discover UCSF team has followed and risks of TYSABRI treatment and biomedical strategies that on its effort of DNA col- minimize potential risk of progressive will restore and protect lection from populations multifocal leukoencephalopathy (PML). neurological function in at high, moderate and low Because of the increased risk of PML, MS and translate such dis- risk of MS to analyze TYSABRI is generally recommended for coveries toward effective treatments for their genetic make-up and patients who have had an inadequate people with MS. Key objectives are to understand the rules of MS inheritance. response to, or are unable to tolerate, investigate the potential of cell transplan- Multiple collaborations within the alternate MS therapies. Center Without Walls allow for outstand- tation based approaches in restoring function in MS, preserve neurological ing recruitment. The team has completed Under the TOUCH Prescribing Program, function within the injured brain and one of the most powerful genetic study only prescribers, infusion centers and spinal cord in MS, via novel strategies ever performed in MS, and reported that pharmacies associated with infusion cen- that protect axons so that they do not HLA genes, the master regulators of the ters registered in the TOUCH program degenerate; study the molecular physiol- immune response, constitute the are able to prescribe, infuse or distribute ogy and pathophysiology associated with strongest genetic factor affecting MS TYSABRI. Elan has contracted with a nerve impulse conduction, and identify susceptibility. These data have profound single distributor, ICS, a division of strategies that will restore normal con- implications for the future directions of AmerisourceBergen Specialty Group, duction within demyelinated axons and MS genetics research. UCSF has also and 12 specialty pharmacies: Caremark, evaluate the potential of novel neuroreha- continued to study to the influence of CuraScript, PharmaCare, PrecisionRx bilitative therapies in restoration of gait statin drugs, which lower the levels of Specialty Solutions, Medmark, BioScrip, and motor function following in MS. cholesterol, on the immune system in McKesson Specialty, Option Care, Cigna association with other MS medications Tel-Drug Specialty Pharmacy, Aetna such as Copaxone. Specialty Pharmacy, Prescription Biogen Idec and Elan Solutions, and Accredo NovaFactor. ICS University of Southern Announce Availability of and the 12 specialty pharmacies have California, Los Angeles been trained on the TOUCH Prescribing TYSABRI® for Program and are obligated to follow the Director, Leslie P. Weiner, M.D. requirements of the program in order to Treatment of Relapsing purchase and distribute TYSABRI to The team at USC Center forms of Multiple authorized infusion sites and central has been working in the pharmacies. new field of stem cell Sclerosis research. They have been In addition, following the recent studying both human Cambridge, MA and Dublin, Ireland - approval by the European Commission, adult (derived from July 24, 2006 - Biogen Idec (NASDAQ: the companies have introduced umbilical cord cell, baby teeth and BIIB) and Elan Corporation, plc (NYSE: TYSABRI in several countries in human embryonic stem cells) and ELN) today announced the commercial Europe. approved for federal funding. They have availability of TYSABRI® (natalizumab) been successful in culturing oligoden- for the treatment of relapsing forms of http://www.biogenidec.com/site/019_0.h droglial precursor cells (when mature, multiple sclerosis (MS) in the U.S. As tml?pr_id=../news/BiogenIDECPR_136. these cells are capable of making previously announced, the U.S. Food and htm myelin). This year, they have shown that Drug Administration (FDA) approved the these cells, when injected into mice that supplemental Biologics License are genetically devoid of myelin, can Application (sBLA) for the reintroduc- myelinate axons with human myelin. tion of TYSABRI as a monotherapy The team at USC expects that precursors treatment for relapsing forms of MS to derived from stem cells have the hope of slow the progression of disability and repair and regeneration, either in the nat- reduce the frequency of clinical relapses. ural state or after being engineered to resist the hostile environment present in The FDA granted approval for reintro- the central nervous system of an MS duction based on the review of patient. 14819_2006Race2Erase.qxd 11/2/06 1:13 PM Page 8

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tatin may also have neuroprotective The Center Without Walls: properties, the centers also use spec- troscopy, a sophisticated magnetic reso- Group Overview of Clinical Trial Projects nance technique, to determine whether atorvastatin prevents brain damage. This The Nancy Davis Center Without Walls remitting MS or early MS is an exciting trial, as the medication is (NDCWW) has become a leading con- - Lipitor in early MS given orally and is much safer than many sortium in the development of promising - Memantine for MS cognitive impair- immunologic therapies considered for agents for multiple sclerosis (MS). The ment multiple sclerosis. This is also one of the strategy of the NDCWW is first to evalu- first times the CWW centers are able to ate novel treatment approaches in single- The Center has also continued three col- share their advanced magnetic resonance center or two-center studies which, if laborative studies of a novel intravenous technology. Fourty six patients have proven promising, are later developed drug, rituximab, in relapsing remitting been enrolled nationwide. We are plan- collectively. During the past year, the and primary progressive MS. ning to enroll approximately 152 patients Center Without Walls has made major with their very first MS event and moni- contributions toward developing a cure Oral interferon tau tor for one year the effect of the drug for multiple sclerosis. Four of the Centers (Harvard, OHSU, compared to placebo. The study USC and UCSF) are collaborating on the designed by UCSF is sponsored by the study of oral interferon tau in patients COLLABORATIVE STUDIES Immune Tolerance Network, Biogen with relapsing remitting MS or clinically The Center Without Walls now has sever- Idec and Pfizer. al collaborative studies underway in var- isolated syndromes suggestive of early MS. Jeff Cohen at the Cleveland Clinic ious stages of development. Memantine for cognitive impairment serves on the Data and Safety Monitoring in MS Board. Studies Completed This year OHSU, in collaboration with In the Past Year USC, has continued a double blind We have enrolled 28 patients in this placebo-controlled pilot trial of meman- study. All the patients have completed the tine for cognitive impairment in MS. Six of the Centers (Cleveland, UCSF, study except for one who will be done Memantine is a glutamate receptor USC, Yale, Johns Hopkins and OHSU) with study participation in January 2007. antagonist that has been shown to are also participating in a study that will The medication has been well tolerated improve cognition in Alzheimer’s dis- compare the benefits of adding monthly so far. This important ongoing study will ease. This trial is designed to assess Solumedrol or oral methotrexate to evaluate whether oral interferon tau whether memantine will improve cogni- Avonex in patients who experience exac- decreases MS activity on serial brain tion among MS patients. erbations while on Avonex. This study, MRI scans. Oral interferon may turn out headed by the Cleveland MS center, is to be comparable to approved interferon Treatment that decreases antibodies the first large pivotal study of combina- beta with fewer side effects, and it is eas- against the nervous system tion therapy. Dr. Calabresi at Johns ier to administer. We anticipate that data All seven Centers are involved in a new Hopkins is part of the Data and Safety analysis will be completed in February treatment strategy using rituximab, a Monitoring Board of this study. At this 2007 for report to the FDA. We plan to monoclonal antibody against the B cell time, all patients have completed the 12- submit an abstract to the American receptor CD20 that depletes B cells (B month study period and data is being ana- Academy of Neurology for presentation cells make antibodies against con- lyzed. The study designed by the of the data to the public in April 2007. Cleveland Clinic is sponsored by Biogen stituents of the brain). We believe that this strategy of depleting B cells and Idec. We anticipate that the results of this Lipitor (atorvastin) for patients with lowering the level of antibodies they study will be available during the Fall early multiple sclerosis make may prevent exacerbations and 2006. Six of the Centers(UCSF, Cleveland, subsequent nerve damage. Rituximab is USC, Yale, OHSU and Johns Hopkins) administered intravenously every six Ongoing Studies are following up on the exciting work in months. It is FDA approved for non- animal models suggesting that atorvas- Hodgkin lymphoma and is relatively The NDCWW has continued or initiated tatin (taken by millions of individuals to well tolerated. The small study of patient enrollment in several collabora- treat high blood cholesterol) will provide retreatment safety is fully enrolled (26 tive clinical trials of oral medications for therapeutic benefit to patients with MS. patients) and data will be analyzed early MS that have been designed by the The reason we believe the medication 2007. The large double-blind study in NDCWW: may treat MS is that this drug significant- relapsing remitting MS that will test the ly decreases the activation of the immune safety and preliminary efficacy of one - Interferon tau in patients with relapsing system that occurs in MS. Since atorvas- round of injections of the drug vs. place- 14819_2006Race2Erase.qxd 11/2/06 1:13 PM Page 9

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bo (Protocol Chairs: Emmanuelle SINGLE-SITE PILOT decades in humans and is safe, it is excit- Waubant, UCSF and Peter Calabresi, STUDIES ing to prepare for a larger study that will Johns Hopkins) is fully enrolled (100 Some very novel agents are currently confirm whether the drug also protects patients). The data will be analyzed in being developed by individual NDCWW the brain of MS patients. Support is September 2006 and we anticipate that centers. Single-site studies serve the valu- requested for MRI and a research assis- the results will be presented to the public able function of deriving preliminary data tant for this study. early 2007. Finally, the large double that, if encouraging, will come to fruition blind trial that will evaluate the efficacy as larger collaborative trials. OHSU is continuing with the study of of rituximab in patients with primary omega-3 fatty acid in the treatment of progressive MS over two years (Protocol Studies Completed depression in patients with MS and with Chairs: Kathleen Hawker, Cincinnati and the study of American ginseng for treat- Jack Antel, Montreal) is fully enrolled in the Past Year ment of MS fatigue. The team is also con- (400 patients). These exciting studies are tinuing with the study of lipoic acid in likely to reveal the exact role of B cells The Harvard team has completed a study MS and memantine for cognitive impair- in MS, which has been poorly under- of CTLA4-Ig in relapsing MS. CTLA-4Ig ment in MS. stood until now. Genentech, the study blocks T cell activation and suppresses sponsor, has agreed to support state-of- inflammation. The data from the study Studies About to Start the-art immunological studies that will showed that CTLA-4Ig is safe in MS and help understand the role of B cells in MS there is evidence of biologic activity by Neuroprotection with riluzole in early and the effect of the medication. changes in the immune markers in the MS (see confidential protocol included blood. They are now planning a phase II at the end) Studies About to Start study. UCSF will initiate during the Fall 2006 a study of riluzole in patients with early Cell based gene therapy The Oregon Health Center has completed MS. Riluzole is an approved drug already USC, in collaboration with UCSF is the analysis of a single-site study of vac- shown to slow down Lou Gehrig’s dis- about to launch a cell based gene therapy cination with a portion of the T cell recep- ease. Patients will receive two year thera- study. This is a unique delivery system tor that is well tolerated in patients with py with riluzole or placebo in addition to that puts human cells engineered to slow- MS. This vaccine triggers a vigorous interferon beta-1a as a standard of care. ly release a myelin protein in a special immune response to the vaccine and Fourty patients will participate to this chamber and then placed under the skin boosts regulatory cells in most patients. study at UCSF. Sanofi-Aventis is provid- to desensitize MS patients to myelin pro- This study has provided data needed to ing free riluzole and placebo, and Biogen teins. successfully design the follow-up trial of Idec is providing free interferon beta-1a. this vaccine in MS. Support is requested towards scanning Recombinant T Cell Ligand Therapy patients in this study and study coordina- Two of the Centers, OHSU and USC, Ongoing Studies tor effort. will initiate a Phase I safety and dose finding study of the DR2-MOG 35-55 Following the finding that Salbutamol TCR Peptide Vaccination RTL, referred to as RTL1000. Patients (used in asthma) decreases the release of OHSU will initiate another open label with MS and positive for a specific IL-12, a pro-inflammatory product that is trial of T cell vaccination, NeuroVax. marker (DR2+) will receive single i.v. deleterious in MS, the group at Harvard Twenty subjects will be enrolled. The infusions of RTL1000 of increasing has continued with their study of primary purpose of the trial is to deter- doses (6-300 mg). Outcomes will be Copaxone plus Salbutamol to determine mine if less frequent injections (three safety, including MRI monitoring for if the association enhances the anti- monthly injections followed by injections disease activation and antibody forma- inflammatory effect of Salbutamol. Being every three months) of NeuroVax can tion to the RTL1000. This is the first able to decrease the release of the pro- effectively maintain immune responses to step in developing RTL1000 as a novel inflammatory product could prevent the vaccine. immunotherapy for MS. exacerbations of MS. Lipoic acid Database sharing The Yale group has started to evaluate After the on-going pharmacokinetic study UCSF and OHSU will start this year safety and preliminary efficacy of oral of lipoic acid will be completed, OHSU sharing anonymous clinical data through Dilantin (a medication for epilepsy) as a will design in the coming year a trial of a database system that has been used at potential neuroprotective agent in MS. In oral lipoic acid as an adjuvant therapy to UCSF for the past 5 years. Sharing this the animal model, this medication has interferon beta for patients with second- type of information enhances our pace to protected the central nervous system from ary progressive MS. better understand MS. major brain cell death in the model for MS. As this oral agent has been used for 14819_2006Race2Erase.qxd 11/2/06 1:14 PM Page 10

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PHOTO GALLERY DISCO FEVER TO ERASE MS: May 12, 2006

Ryan Seacrest, Harry Hamlin, Kenny Rickel, Nancy Davis, Tommy Hilfiger Sharon Osbourne Nancy Davis with Kool & The Dimitri Hamlin Tommy Hilfiger Fashion Show Finale and Stevie Wonder Gang, Sister Sledge, Natalie Cole

Lisa Rinna Kimberly and , Kool & The Gang , Tommy Hilfiger Barbara Davis with and Louie Van Amstel and and Natalie Cole and Nicole Richie Alex and Arda Yemenidjian

Jerry and Tawny Sanders Tom Arnold, Brooke Shields Rod Stewart and David Foster Ken Rickel, Debbie and Jimmy Lustig and Chris Henchy and Nancy Davis

Nicky Hilton and Brandon Davis Jamie Tisch, Charles Perez, Nicole Richie Rebecca Hernreich, Mary Virginia Knight, Henry Ryan Seacrest Steve Tisch Fong, Gail and Dennis Flynn, Jo Champa and Randy Jackson

Amy Nader, Lyndi Hirsch, Steven Cojocaru Dana Davis and Lynn Palmer Jena King,Charles Perez, Scott Martin Steven Holtzman, David Nader and Linda Thompson Crystal Lourd, Jamie Tisch and Lauralee Bell Martin 14819_2006Race2Erase.qxd 11/2/06 1:14 PM Page 11

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Macy Gray Reese and Mary Milner, Jon Lovitz, Anne Heche and Nancy Davis Rachel Bilson Jamie Tisch Lynn Palmer and Robert Bloomingdale and Nancy Davis

Anne Heche, Natalie Cole, Kool & The Gang, Carson Daly, Nancy Davis Iris and Michael Smith, Sharon Osbourne, Larry Bruce, Ken Rickel and Nancy Davis and Ken Sunshine Arlene Hirschfeld Kelly Osbourne

Melinda Clarke and Rachel Bilson Lindsay Lohan Byron Allen with Friend, Stevie Wonder, Nancy David Foster with friends Suzanne de Passe, Nick Chavez Davis and Kai Wonder and Barbara Davis

Alexander Davis and Friends Natalie Cole Brandon and Nancy Davis Marcy Taub, Erica Courtney, Arda and Alex Yemenidjian and Debbie Lustig Lynn Palmer and Tracy Danza

Paris Hilton Tony Williams with Guests Tom and Shelby Arnold May Ahringer, Caroline Leduc, David Charvet Pam McMahon and Brooke Burke 14819_2006Race2Erase.qxd 11/2/06 1:14 PM Page 12

PAGE 12 FALL 2006 Multiple Sclerosis Health Advisory and Resource Center Walk Aid sensitive programs. We advocate for What you need to know preservation of cultural diversity and enhancement of the quality of life. about Devic's Disease WalkAide is a medical device that, after more than a decade in development, has Many of our members have been able to (Synonyms: neuromyelitis optica, NMO, received marketing clearance from the obtain access to healthcare, educational Devic's syndrome) FDA for improving walking ability of services and resources that encourage people suffering from Foot Drop. Foot maximum quality of life. FULWMS Devic's disease is an inflammatory dis- Drop is a condition caused by weakness works with more than 1000 community ease of the central nervous system in or paralysis of the muscles involved in partners to provide comprehensive serv- which there are episodes of inflammation lifting the front part of the foot, which ices. All our services are provided free and damage to the myelin (fatty, protec- causes a person to drag the toe of the of charge. Services include, and are not tive covering of nerves) that almost shoe on the ground or slap the foot on the limited to various resources in: English, exclusively affect the optic (eye) nerves floor. Spanish and Chinese. For more info call and spinal cord. It usually causes tempo- (323) 261-5565 / 877 AYUDA-MS rary blindness, occasionally permanent, Invented by a team at the University of in one or both eyes. It can also lead to Alberta, WalkAide simulates the typical varying degrees of weakness or paralysis nerve-to-muscle signals in the leg and Acute Disseminated in the legs or arms, loss of sensation, foot, effectively lifting the toes at the Encephalomyelitis and/or bladder and bowel dysfunction appropriate time during the gait cycle. from spinal cord damage. The resulting movement is a smoother, more natural and safer stepping motion. Acute disseminated encephalomyelitis Types Users are able to walk faster and for (ADEM) is a neurological disorder char- longer distances with less fatigue. In fact, acterized by inflammation of the brain It appears as though there are two major many people who try WalkAide experi- and spinal cord caused by damage to the types of Devic's disease. In the first type, ence immediate and substantial improve- myelin sheath. The myelin sheath is the optic neuritis, (inflammation of the optic ment in their walking ability, which fatty covering, which acts as an insulator, nerve), and myelitis, (inflammation of the increases their mobility, functionality, on nerve fibers in the brain. ADE may spinal cord), episodes tend to come very and overall independence. WalkAide is a occur in association with a viral or bacte- close together often within days or sophisticated medical device that can rial infection, as a complication of inocu- weeks, and there is no recurrence after the only be prescribed by a physician. As lation or vaccination, or without a pre- initial flurry of symptoms. In the second with all orthoses, a thorough evaluation ceding cause. Onset of the disorder is form, repeated episodes of optic neuritis by a credentialed and trained medical sudden. Symptoms, which vary among and myelitis occur that are separated by professional will determine if WalkAide individuals, may include headache, delir- months or years. is right for you. ium, lethargy, coma, seizures, stiff neck, fever, ataxia, optic neuritis, transverse Differences from Multiple Sclerosis For more information please visit: myelitis, vomiting, and weight loss. www.ininc.us Other symptoms may include monopare- sis (paralysis of a single limb) or hemi- In well established cases of Devic's dis- plegia (paralysis on one side of the ease, it is usually possible to accurately Direct Services for MS body). The disorder occurs in children tell the difference between Devic's dis- more often than in adults. ease and MS. However, early in their course, it may be difficult to definitively The mission of Familia Unida Living separate these two conditions. However, with Multiple Sclerosis (FULWMS) is to Optic Neuritis there are some differences. Enlighten, Educate, and Unite Families affected by Multiple Sclerosis and other Optic neuritis is an inflammation of the Devic's disease affects only the optic debilitating diseases in our culturally optic nerve. With optic neuritis, the nerve nerves and spinal cord, whereas MS diverse communities and to offer support becomes swollen and the nerve fibers do affects the brain as well. Attacks of services to diverse populations that not work properly. If some or all of the Devic's disease tend to be more frequent request our attention. It is our ethical nerve fibers become inflamed and do not and severe than in MS, though this is not responsibility to promote awareness of function properly, vision becomes always the case. An MRI of the brain is the growing number of individuals blurred. typically normal in Devics disease, afflicted by MS and provide culturally (DEVICS continued on Page 13) 14819_2006Race2Erase.qxd 11/2/06 1:14 PM Page 13

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(DEVICS continued from Page 12) although this is not always the case; in Genetic Research and MS MS the MRI of the brain typically shows many areas of inflammation. An MRI of By Dr. Peter Oxenberg, UCSF the spinal cord shows large extensive areas of inflammation of the spinal cord Genes, the fundamental hereditary units, these normal genes appear to predispose whereas in MS typically the areas are are likely to play an important role in some individuals to develop MS follow- much smaller. determining who is at risk for developing ing exposure to an undefined environ- Spinal fluid studies tend not to show the MS, how the disease progresses, and how mental factor or factors. typical elevation of antibodies detected in someone responds to therapy. However, patients with MS, although occasional the role of genes in MS is likely to be Whereas identification of all the genetic patients may show this abnormal pattern complex. This is in contrast to other dis- contributions to MS has long been recog- of antibodies. eases that have a simple genetic basis. For nized as a major step toward treating the Outcomes of Devic's Disease example, Huntington's Disease or Cystic disease, this has remained an unmet chal- Fibrosis are caused by a single dominant lenge. Recent technological advances The course of Devic's disease is highly gene--individuals carrying the wrong ver- together with a better understanding of variable. It largely depends on whether sion of the gene, will be affected. In MS, the genome architecture are opening new there is a tendency for relapses to occur it is more likely that many different genes and promising opportunities to unravel after the initial flurry of symptoms that are involved, each with a small effect. We the genetic basis of MS. Understanding leads to the diagnosis. believe that the genes associated with this the role of genes in MS could revolution- disease are not themselves abnormal. ize the way this disease is diagnosed and In general, attacks of Devic's disease tend Rather, they include some specific struc- treated. For additional reading on MS to be more frequent and severe than they tural variations that may or may not be Genetics research see The Multiple Sclerosis Genetics Project at the University of are in MS. The major risk to patients is common in the population. In fact, some of these variations may be advantageous California San Francisco severe damage to the upper spinal cord, (http://www.ucsf.edu/msdb) which can lead to inability to breathe on to have. However, in some combinations one's own. This may be fatal. However, (RACE continued from Page 1) (MEMORY continued from Page 3) some patients with Devic's disease seem to enter a long period of time where the with the Stars” and a fabulous trip to St. cognitive performance while those taking disease remains stable. Devic's disease Regis Bora Bora which included airfare placebo did not. Also, those taking gink- has not been studied in large enough pop- on American Airlines. go showed a significant improvement on ulations to predict the outcome of indi- one of the cognitive tests which assessed vidual cased with great certainty. Among the guests were such superstars concentration and ability to switch tasks as Paris and Nicky Hilton, Nicole Richie, while those on placebo did not. Complications of Devic's Disease Jon Lovitz, Rod Stewart, Randy Jackson, Importantly, ginkgo was safe and none of Lisa Rinna, Kelly Osbourne, Lara Flynn the people taking ginkgo experienced Permanent blindness may occur in one or Boyle , Stevie Wonder, Tom Arnold and side-effects. both eyes. Permanent loss of strength or Brooke Shields sensation in the arms or legs may occur. "These results suggest that ginkgo may be Inability to control the bowel or bladder The party was decked out with a disco a cost effective way of helping people function may also occur. fever touch by well known designer, with MS who experience changes in their Mindy Weiss and the unbelievable floral mental efficiency," said Dr. Dennis At any point in this disease, patients may arrangements with mirrored disco balls Bourdette, who headed the team studying develop sudden brief, repetitive spasms. were generously donated by Marks ginkgo. "This was a small study and we These spasms may also occur in MS, but Garden, also to Sauza Tequila, Fiji need to do a much larger study before we they are very common in Devic's disease. Water, Rutherford Winery, Anheuser can say with certainty that ginkgo is help- With these spasms, patients develop pro- Busch and Dirty Sue. Frederic Fekkai ful," concludes Dr. Bourdette. The team longed tightening of arms and legs that and MAC created the amazing hair and at the OHSU MS Center has applied for last for 15 seconds to 2 minutes. They makeup for the fashion show. federal funding to do a placebo controlled may be painful and recur several times a trial of ginkgo involving 120 people.The day. In most cases, they respond very suc- Thank you again to everyone involved in results of this study will be published in cessfully to treatment with an anticonvul- helping to make this evening such a the journal Multiple Sclerosis later this sant medication. grand success and make sure to save the year. date of April 13, 2007 for our 14th Copyright © 2006 The Transverse Myelitis Association. All rights reserved. Document: Annual Race to Erase MS event. www.myelitis.org/devics_disease.htm Last Modified: Wednesday, 26-Jul-2006 17:23:37 PDT 14819_2006Race2Erase.qxd 11/2/06 1:14 PM Page 14

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cord -- readied the conditioned ES cells Hopkins Scientists Use Stem Cells, New Cues for the motor neuron circuit that starts in the spinal cord. Then, stem cells were fed to Awaken Latent Motor Nerve Repair into the paralyzed rats’ spinal cords.

In a dramatic display of stem cells’ sive infection with Sindbis virus -- one Extending new motor neurons in an adult potential for healing, a team of Johns that, in rodents, specifically targets motor nervous system, however, meant over- Hopkins scientists reports that they’ve neurons and kills them. The animals coming hurdles. One involved myelin, engineered new, completed, fully-work- recovered enough muscle strength to bear the fatty material that insulates mature ing motor neuron circuits -- neurons weight and step with the previously para- motor neurons. Like the coating on elec- stretching from spinal cord to target mus- lyzed hind leg. trical wire, myelin prevents weakening of cles -- in paralyzed adult animals. the traveling electrical impulse and lets it Kerr likens the approach to electrical continue long distances. In humans, the The research, in which mouse embryonic repair. “Paralysis is like turning on a light myelinated sciatic nerve, for example, stem (ES) cells were injected into rats switch and the light doesn’t go on. The exits the spinal cord and extends to the whose virus-damaged spinal cords model connectivity is messed up but you don’t leg muscles it activates, carrying impuls- nerve disease, shows that such cells can know where. We’ve asked stem cells to es several feet. be made to re-trace complex pathways of go where needed to fix the circuit.” nerve development long shut off in adult Once laid down, however, myelin mammals, the researchers say. For a brief period after a nerve dies, it inhibits further nerve growth -- nature’s leaves behind what’s essentially an way to discourage excessive wiring in the “This is proof of the principle that we can empty shell, with some scaffolding and nervous system. “We had to overcome recapture what happens in early stages of non-nerve substances remaining. But inhibition from myelin lingering in the motor neuron development and use that with ES injections at the right time and dead nerve pathways,” Kerr explains. to repair damaged nervous systems,” place, and by adding the right cues, Two recently-developed agents, rolipram says Douglas Kerr, M.D., Ph.D., a neu- we’ve learned to restore the biological and dbcAMP enabled that. rologist who led the Hopkins team. ‘memory’ for growing neurons, which is clearly still in place,” he added. The assorted treatments let the new “It’s a remarkable advance that can help motor neurons survive, grow through the us understand how stem cells can begin The motor circuit engineering combines spinal cord and extend slightly into the to fulfill their great promise,” says Elias recent discoveries on stem cell differenti- outlying nervous system. A second hurdle A. Zerhouni, director of the National ation, a growing understanding of early remained in getting the neurons to skele- Institutes of Health. “Demonstrating development of the nervous system, and tal muscle targets. restoration of function is an important insights into behavior of the nervous sys- step forward, though we still have a great tem in traumatic injury, Kerr notes. As suggested by earlier work by team distance to go.” member Ahmet Hoke on repair in the out- “As adults, our cells no longer respond lying, peripheral nervous system, the The researchers created what amounts to to early developmental cues because researchers applied GDNF, a powerful a cookbook recipe to restore lost nerve those cues are usually gone,” says Kerr. stimulator of neuron growth, to the function, Kerr explains. The approach “That’s why we don’t recover well from remains of the newly-dead sciatic nerve could one day repair damage from such severe injuries. But that’s what we at a point near its former leg muscle con- diseases as ALS (Lou Gehrig’s disease), believe we have changed. We asked what tacts. GDNF attracted the extending multiple sclerosis or transverse myelitis was there when motor neurons were motor neurons, “luring” them to the mus- or from traumatic spinal cord injury, the born, and specifically what let motor neu- cles. To ensure a continuous supply of researchers say. “With small adjustments rons extend outward. Then we tried to GDNF, the researchers relied on injected keyed to differences in nervous system bring that environment back, in the pres- fetal mouse neural stem cells, a known targets,” Kerr says, “the approach may ence of adaptable, receptive stem cells.” source of the molecule. also apply to patients with Parkinson's or Huntington’s disease.” In the study, Kerr’s team first pre-treated Of some 4,100 new motor neurons creat- cultures of mouse embryonic stem cells ed in the spinal cord, roughly 200 exited In a report on the study, to be released with growth factors that both increase the cord and 120 reached skeletal muscle, online June 26 in the Annals of survival and prompt specialization into forming typical nerve-muscle junctions, Neurology, the Hopkins team says 11 of motor neurons. Adding retinoic acid and with appropriate, typical chemical mark- the 15 treated rats gained significant, sonic hedgehog protein -- agents that ers. Microscopically, the neurons and though partial, recovery from paralysis direct cells in the first weeks of life to their muscle associations appear identical after losing motor neurons to an aggres- assume the proper places in the spinal STEM CELLS continued on Page 15) 14819_2006Race2Erase.qxd 11/2/06 1:14 PM Page 15

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STEM CELLS continued from Page 14) to natural ones in healthy animals. Lean On Me: A Book by Nancy Davis Fifty of the new neurons were found to carry electrical impulses. (Because such A journey of inspiration testing is time and labor intensive, only a small area of leg muscle was assayed. Lean On Me: Ten Powerful Steps to Being Your Own The improved ability of treated rats, how- Health Advocate and Taking Back Your Life - “This is the ever, suggests more functional neurons quintessential book I wish had been available before I are likely.) The rats gained weight, were was diagnosed with MS,” says Nancy Davis. Released more mobile in their cages and measures on March 26, 2006 by Simon and Schuster, “Lean On of muscle strength increased. Me” has been an inspirational journey for Nancy Davis. She is so blessed by the people she has met through her Animals treated without even one com- travels with “Lean On Me” and feels so fortunate to have ponent of the “cocktail” experienced no had the opportunity to help other people facing a health such recovery. Novel ways of tracing the crisis. neurons back to their source assured the scientists that they indeed had come from Nancy is so grateful to those who have read her book and the injected stem cells, not from lingering is truly moved by the enormous amount of people who host neurons. have expressed how their lives have been positively affected and expressed their appreciation of her writings. She has received so many supportive and beautiful notes Research begins this summer to see how of encouragement and is so appreciative of the personal stories that people have well the technique applies to human shared about their own triumphs as well as their struggles. nerve recovery, using federally-approved human ES cells in larger mammals like Dr. Stephen Hauser says it is a book that every doctor should be required to read in pigs, Kerr says. Each of six academic medical school. Her empowering and essential ten-step program teaches readers of institutions in a new collaboration will all ages how to take charge of their own lives and their own health care in the face of tackle a different major question of safe- life-altering or life-threatening diseases. She demonstrates how the average person ty and effectiveness. Questions of tumor- can master the formidable American health care system to create a fulfilling life worth formation, often a concern with ES cells, living. This truly inspirational book combines Nancy’s moving personal story with of the safety of surgery and of the ES practical, positive strategies for anyone grappling with the healthcare bureaucracy. cells’ ability to form healthy motor cir- Far more than a manual for coping with disease, Lean On Me is a guide to creating cuits are major questions to answer. the life you want and building a future filled with promise. Several years of testing and thorough data evaluation would occur before “Lean on Me” is due out January 2, 2007 in soft cover. Upcoming “Lean on Me” applying to the FDA to approve human events will be posted on erasems.org. You can order a copy of “Lean On Me” at clinical trials. The study was supported www.amazon.com or www.barnesandnoble.com. by Families of SMA, Andrew’s Buddies/Fight SMA, the ALS "For those who accept responsibility for protecting, nurturing, and enhancing their Association and The Robert Packard own health, this book has much to offer." – Sidney Poitier Center for ALS Research at Johns Hopkins, the Muscular Dystrophy "When America made the regretful decision to start treating patients as 'consumers,' a Association, Wings Over Wall Street, and giant need was created for someone to guide us through the greed and bureaucracy a grant from the NIH. that now rules health care, and Nancy Davis has filled that need. Born of her first- hand struggle with MS, her boundless energy, and epic compassion, this is the book Kerr is a grantee of The Packard Center everyone really should read before a health crisis hits you or someone you know." for ALS Research at Johns Hopkins. He - Bill Maher also directs Project RESTORE, a Hopkins-based undertaking to advance "Nancy Davis has written the definitive book for anyone who wants to take back their therapies for transverse myelitis and mul- power. Inspiring and moving, Nancy Davis has written a wonderful book." tiple sclerosis. - Jackie Collins Jill and Heather are very good friends and tremendous Johns Hopkins Medicine supporters of “Lean on Me” and the Race to Erase MS. A Media Relations and Public Affairs special thank you to them for sending in this photo of Media Contact: Eric Vohr Heather’s License plate! 410-955-8665; [email protected] June 20, 2006 Jill and Heather are from Phoenix, Arizona 14819_2006Race2Erase.qxd 11/2/06 1:14 PM Page 16

PAGE 16 FALL 2006 More Photos: DISCO FEVER TO ERASE MS

Jason Davis and Tom Arnold Tommy Hilfiger Louie Van Amstel, Dimitri, Nancy Davis Alexander Davis, Julia Mavris, and Lynn Palmer Lisa and Harry Hamlin and Sophia Bush Jason Davis and Anne Heche

Evelyn and Bob Rickel Francis Najafi and Guest “Lean on Me” Celebrity Brandon Davis Sister Sledge with Barbara Davis with Nancy Davis Sing-a-Long Finale and Kelly Osbourne

Holly Robinson Peete, Sherry Corday and Guests Michelle Trachtenberg, Guest Cheryl Burke, Tom Arnold, Samaire Armstrong Sharon and Kelly Osbourne and Jason Davis Drew Lachey

Ralph Bellizzi, Connie Genova, Nancy Davis with Ali and Dr. Stephen Hauser, Elaine Hauser, Kristin Cavalleri Scott Martin Alberta Utech, Rachel Alvarez Elizabeth Hilfiger Nancy and Barbara Davis and Lauralee Bell Martin

Charles Perez, Natalie Cole Debbie and Doran Adhami Tom Arnold Rebecca Hernreich with Laura and Dr. Peter Waldstein and Nancy Davis and Nancy Davis Gail and Dennis Flynn 14819_2006Race2Erase.qxd 11/2/06 1:14 PM Page 17

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Tommy Hilfiger Lara Flynn Boyle with Friends Ken Rickel Kool & The Gang and Natalie Cole Bob Lorsch with Friends and Brandon Davis and Nancy Davis

Jo Champa Brooke Burns Dr. Adam Kaplin, Rose Barondess Natalie Cole and Joe Farrell, Jimmy Lustig and Guest and Thomas Ciampa

Larry Thompson Bubba Lourd and Steve Tisch Simon Rex Chelsea Baker, Ann Cassidy, Nancy Davis, with Guests Tom Arnold and Will Baker

Gregory Itzin and Guest Drew Lachey Barbara Davis, Stevie Wonder Nancy Davis with Freinds Steven Pal with Guests and David Foster

Digby Diehl, Nancy Davis and Kay Diehl Jason Davis with Friends Tracy and Bryan Elliot Stacy Keibler 14819_2006Race2Erase.qxd 11/2/06 1:14 PM Page 18

PAGE 18 FALL 2006 Transverse Myelitis: Symptoms, Causes and Diagnosis by Joanne Lynn, M.D.

Transverse myelitis (TM) is a neurologic cord. The cause of idiopathic transverse 80%; however, the majority of studies syndrome caused by inflammation of the myelitis is unknown, but most evidence show a low risk. We do know that spinal cord. TM is uncommon but not supports an autoimmune process. This patients who have abnormal MRI scans rare. Conservative estimates of incidence means that the patient's own immune sys- of the brain with lesions like those seen in per year vary from 1 to 5 per million pop- tem is abnormally stimulated to attack the MS are much more likely to go on to ulation (Jeffery, et.al., 1993). The term spinal cord and cause inflammation and develop MS than those who have normal myelitis is a nonspecific term for inflam- tissue damage. Examples of autoimmune brain MRIs at the time of their myelitis mation of the spinal cord; transverse diseases which are more common include (between 60 and 90% for those with refers to involvement across one level of rheumatoid arthritis, in which the abnormal brain scans, less than 20% for the spinal cord. It occurs in both adults immune system attacks the joints, and those with normal scans in one study). It and children. You may also hear the term multiple sclerosis, in which myelin, the is also suggested in the medical literature myelopathy, which is a more general insulating material for nerve cells in the that patients with "complete" transverse term for any disorder of the spinal cord. brain, is the target of autoimmune attack. myelitis (which means severe leg paraly- sis and sensory loss) are less likely to Clinical Symptoms TM often develops in the setting of viral develop MS than those who had a partial TM symptoms develop rapidly over sev- and bacterial infections, especially those or less severe case. The literature also eral hours to several weeks. which may be associated with a rash suggests that patients who have abnormal Approximately 45% of patients worsen (e.g., rubeola, varicella, variola, rubella, antibodies in their spinal fluid, called maximally within 24 hours (Ibid.). The influenza, and mumps). Approximately oligoclonal bands, are at higher risk to spinal cord carries motor nerve fibers to one third of patients with TM report a develop MS subsequently. the limbs and trunk and sensory fibers febrile illness (flu-like illness with fever) from the body back to the brain. in close temporal relationship to the onset Diagnosis Inflammation within the spinal cord of neurologic symptoms. In some cases, If the MRI or myelogram shows no mass interrupts these pathways and causes the there is evidence that there is a direct lesion outside or within the spinal cord, common presenting symptoms of TM invasion and injury to the cord by the then the patient with spinal cord dysfunc- which include limb weakness, sensory infectious agent itself (especially tion is thought to have transverse myelitis disturbance, bowel and bladder dysfunc- poliomyelitis, herpes zoster, and AIDS). or vascular problems. The MRI can tion, back pain and radicular pain (pain in A bacterial abscess can also develop sometimes show an inflammatory lesion the distribution of a single spinal nerve). around the spinal cord and injure the cord within the cord. It is difficult to get to the through compression, bacterial invasion cause of the inflammation, because biop- Recovery may be absent, partial or com- and inflammation. sy is rarely done on the spinal cord plete and generally begins within 1 to 3 because of the damage this would cause. months. Significant recovery is unlikely, TM may be a relatively uncommon man- The physician would next send blood for if no improvement occurs by 3 months ifestation of several autoimmune diseases general bloodwork and studies for SLE (Feldman, et. al., 1981). Most patients including MS. A definite diagnosis of MS and Sjogren's syndrome, HIV infection, with TM show good to fair recovery. TM is not given until a patient has had at least vitamin B12 level to rule out deficiency is generally a monophasic illness (one- two attacks of demyelination (hence, and a test for syphilis. A MRI of the brain time occurrence); however, a sm 1000 all multiple) at two different sites in the cen- is often performed to screen for lesions percentage of patients may suffer a recur- tral nervous system. The spinal cord is suggestive of MS. If none of these tests rence, especially if there is a predisposing frequently affected in multiple sclerosis are suggestive of a specific cause, the underlying illness. and may be the site of involvement of the patient is presumed to have idiopathic first attack of MS. This presents the pos- transverse myelitis or parainfectious Causes of Transverse Myelopathy and sibility that patients with acute transverse transverse myelitis, if there are other Myelitis myelitis could later go on to have a sec- symptoms to suggest an infection. Transverse myelitis may occur in isola- ond episode of demyelination and receive tion or in the setting of another illness. a diagnosis of MS. ------When it occurs without apparent underly- Excerpt of article by Joanne Lynn, M.D. ing cause, it is referred to as idiopathic. Just what percentage of patients with a Document Date: October 1997 Idiopathic transverse myelitis is assumed first attack of acute transverse myelitis Copyright © The Transverse Myelitis to be a result of abnormal activation of will go on to develop MS is unclear in the Association. All rights reserved. the immune system against the spinal medical literature, ranging from 15 to http://www.myelitis.org/tm.htm 14819_2006Race2Erase.qxd 11/2/06 1:14 PM Page 19

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CROSSWORD PUZZLE 14819_2006Race2Erase.qxd 11/2/06 1:14 PM Page 20

FALL 2006 PAGE 20 SAVE THE DATE The 14th Annual RACE to Erase MS Friday, April 13, 2007 Hyatt Regency Century Plaza Hotel MISSION STATEMENT The Nancy Davis Foundation for multiple sclerosis is dedicated to MS Roundtable - Open to the Public the treatment and ultimate cure of Saturday, April 14, 2007 MS. Funding research is the core Hyatt Regency Century Plaza Hotel focus of the Foundation and sig- nificant strides have been made to We thank the following sponsors for find the cause and ultimate cure of this devastating disease. their continued dedication and

All funds raised support "The support in our Race to Erase MS! Nancy Davis Center Without Walls", a selected network of the nation's top seven MS research centers. This nationwide collabo- ration of physicians, scientists and clinicians are on the cutting- edge of innovative research pro- grams and therapeutic approach- es to eradicate MS. It is the hope of the Foundation that in addition to combating MS through research in a clinical environment, an increased awareness will be created by educating the public about this mystifying disease.

The Nancy Davis Foundation for Multiple Sclerosis Non-Profit Org. 1801 Avenue of the Stars, Suite 1400 U.S. Postage Los Angeles, CA 90067 PAID Phone: 310-440-4842 GWS. CO Fax: 310-471-4975 Permit No. 5605 http://www.erasems.org Address correction requested

The RACE to Erase MS, The Nancy Davis Foundation for Multiple Sclerosis is a tax exempt 501(c)(3) charitable organization. We do not endorse any company, product or organization referenced in this publication.