16844_Newsletter.cla 9/5/07 5:24 PM Page 1

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!

Vol. 7 Issue 1 Dance to Erase MS April 13, 2007 In This Issue

Annual MS Roundtable Summary...Page 3

Photo Gallery: Dance to Erase MS...Page 4-5, Page 12-13

Center Without Walls: Medical Ken Rickel, Dee Ocleppo, Tommy Hilfiger, Center Summaries...Page 6 Nancy Davis and Lynn Palmer

Center Without Walls: Collaborative Studies...Page 8

Center Without Walls: Single-Pilot Studies...Page 9

Rituxan Update...Page 7

Stem Cells and MS...Page 7 Drew and Nick Lachey model Philip Bailey, Verdine White, David Foster in Tommy Hilfiger Fashion Show and Ralph Johnson Center Without Walls: Clinical Everyone was dancing in the aisles as Co-Chairs Nancy Davis and Tommy Hilfiger celebrated Trial Summary...Page 8 another successful event with special celebrity presenters Joey Fatone, Drew Lachey, Dr. Phil Health Tip and and Robin McGraw, Ray Romano, Daisy Fuentes, Jon Lovitz at the 14th Annual Race to Erase Resources...Page 10 MS event, themed "Dance to Erase MS".

Brain Exercise: Crossword The event took place on Friday, April 13th at the Hyatt Regency Century Plaza and raised over Puzzle...Page 14 2.5 million dollars for multiple sclerosis research thanks to a most generous group of support- ers. Tommy Hilfiger Corporation, Associated Television International, American Airlines, MS Gene Uncovered...Page 15 EMD Serono and the Hyatt Regency Century Plaza all contributed to the tremendous amount of funds raised to support MS research.

Contact Us The highlight of the evening included an exclusive celebrity fashion show featuring one-of-a- (new Address) kind inspired designs by Tommy Hilfiger modeled by such celebrities as Nicole Richie, Nicky The RACE to Erase MS, Hilton, Nick and Drew Lachey and Keisha Whitaker. The amazing dancers from "Dancing with The Nancy Davis Foundation the Stars" kicked off the evening with spectacular live performances by musical legends Goo for Multiple Sclerosis Goo Dolls, Donna Summer and Earth, Wind & Fire who rocked the house and had everyone dancing in the aisles. The show was produced by Associated Television International, 1801 Ave of the Stars, Executive Producer Suzanne de Passe, with David Foster as the Musical Director. Suite 1400 Los Angeles, CA 90067 The ballroom was bejeweled with an art deco touch by well known designer, Mindy Weiss and extraordinary floral arrangements were generously donated by Marks Garden. Thank you to Phone: 310.440.4842 Fax: 310.471.4975 sponsors Makers Mark, Fiji Water, Wolf Blass Wine, Sapporo and Pierre Marcolini Chocolatier www.erasems.org as well as Frederic Fekkai and MAC who created the amazing hair and makeup for the fashion show. (RACE continued on Page 11) 16844_Newsletter.cla 9/5/07 5:24 PM Page 2

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The RACE to Erase MS, Message from Nancy Davis The Nancy Davis Foundation for President and Founder Multiple Sclerosis "A diagnosis of any life altering disease is a terrifying expe- BOARD OF DIRECTORS rience...the world as you know it is changed in a heartbeat. Nancy Davis, President When I was told I had multiple sclerosis fifteen years ago, Tom Arnold Katie Brass hopelessness set in as doctors had no substantial information Barbara Davis to give me and there were no drugs or therapies available. It Dana Davis Steve Farber, Esq. is remarkable how the MS landscape has significantly Teri Garr changed in the past fifteen years to help stop the progression Marc Gurvitz Stephen Hauser, M.D. of this disease. Miraculously, there are now six drugs with Tommy Hilfiger FDA approval and a seventh new drug that will hopefully be Claudia Curry Hill Roy Hilton March approved by the end of this year. A cure is so much closer than I could have ever Lynn Palmer imagined . Hopelessness has been replaced by hopefulness. Ken Rickel Montel Williams

Through our Center Without Walls program, there are so many more exciting and THE CENTER WITHOUT WALLS promising new therapies on the horizon. Our seven centers that make up the presti- SCIENTIFIC ADVISORY BOARD gious consortium of the Center Without Walls program have made revolutionary dis- Jack P. Antel, M.D. coveries just this past year which you can read about in our newsletter. This expan- McGill University, Montreal, Canada, Dept. of Neurology and Neurosurgery sion of minds working as a team towards a cure gives me confidence that we will win this RACE to Erase MS in the next decade. I am so grateful for the diligent work of George S. Eisenbarth, M.D., Ph.D. University of Colorado, our Center Without Walls physicians and the continued support of the many generous Health Sciences Center and caring contributors to this cause." Brian Kotzin, M.D. University of Colorado, I Co-Head of Clinical Immunology

Gerald T. Nepom, MD PhD, Director Benaroya Research Institute at Virginia Mason

Symptoms of Multiple Sclerosis THE CENTER WITHOUT WALLS RESEARCH CENTERS Multiple sclerosis causes a large variety of symptoms. Dennis N. Bourdette, M.D. The most common symptoms are: Oregon Health Sciences University Peter A. Calabresi, M.D. • NUMBNESS OR TINGLING John Griffin, M.D. • UNUSUAL FATIGUE, WEAKNESS AND EXHAUSTION Johns Hopkins Hospital • VISION PROBLEMS Stephen Hauser, M.D. • LOSS OF MEMORY University of California, San Francisco • POOR COORDINATION OR DIFFICULTY WALKING Richard Rudick, M.D. • BLADDER PROBLEMS The Mellen Center, Cleveland, Ohio • SLURRED SPEECH Stephen G. Waxman, M.D., Ph.D. Yale University School of Medicine

No two persons with MS will necessarily display the same symptoms, making Howard Weiner, M.D. it difficult to predict the course of the disease for an individual patient. Brigham & Women’s Hospital, Harvard

Symptoms may occur suddenly and remain constant, or may continue in a pro- Leslie Weiner, M.D. University of Southern California gressive or episodic pattern. The uncertainty and unpredictability of MS makes living very difficult for the victims, their families and their friends. Emmanuelle Waubant, M.D., CWOW Medical Director An MRI is the most definitive test to properly diagnose multiple sclerosis. University of California, San Francisco 16844_Newsletter.cla 9/5/07 5:24 PM Page 3

FALL 2007 PAGE 3 MS Roundtable Forum The Center Without Walls April 14, 2007 Collaborating Physicians Once a year The Nancy Davis Foundation invites the general public, MS patients, fam- Dr. Jack Antel, ilies and friends to attend an MS Roundtable, an open forum in which the distinguished Montreal Neurological Hospital doctors from the Center Without Walls program share advances in ground breaking Dr. Rob Bakshi research. Attendees have the unique opportunity to ask questions and to speak to top Brigham & Women's Hospital research scientists. This MS Roundtable is a significant component to the mission of Dr. Bruce Bebo, Oregon Health Sciences the Nancy Davis Foundation, and truly is an important compliment to the previous Dr. Guy Buckle, Harvard nights fundraising event. Brigham & Women's Hospital Dr. Michael Carrithers, Panel members included Dr. Jeffrey Cohen, Dr. Stephen Hauser, Dr. Adam Kaplan, Dr. Yale University Dr. Tanuia Chitnis, Harvard Emmanuelle Waubant, Dr. Stephen Waxman, Dr. Howard Weiner and Dr. Leslie Brigham & Women’s Hospital Weiner, as well as distinguished guests Nancy Davis, Attorney Mark Barondess, and Dr. Jeffrey Cohen, Claudia Curry Hill. The MS Roundtable highlights important medical research con- Cleveland Clinic ducted by each of the seven centers, who communicate every month to share their find- Dr. George Eisenbarth, University of Colorado, ings, and reinforces the need for the existence of The Center Without Walls program. Health Sciences Center Dr. Stephen Hauser discussed the importance of the Centers and believes that “They Dr. Elizabeth Fisher, are not only research centers but large busy centers where patient care happens every Cleveland Clinic day….so it truly is a Center Without Walls where we are moving every day from the Dr. Bob Fox, Cleveland Clinic bedside to the bench.” Dr. Suzanne Gauthier, Harvard Brigham & Women’s Hospital We would like to thank our sponsors Genentech, Hyatt Regency Century Plaza, Le Dr. Claude Genain, Pain Quotidien and Fiji Water for their invaluable donations towards this very impor- University of California, San Francisco Dr. Wendy Gilmore, tant educational opportunity which is always free and open to the public. If you were University of Southern California unable to attend our symposium but would like a copy of the program on DVD, please Dr. Bruce Gold, contact (310) 440-4842. 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. Sanjay Keswani, Johns Hopkins Nikki Levy, Lyndi Hirsch, Nancy Davis with Aj and Katie Brass Lynn Palmer with Roundtable Chair Carol Hunstman and Michael Utz Claudia Curry Hill 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, University of California, San Francisco Dr. Emmanuelle Waubant, Dr. Ari Green, Dr. Bruce Trapp, Dr. Stephen Hauser, Nancy Davis, Dr. Jana Preiningerova, Dr. Stephen Hauser, Nancy Davis, Claudia Curry Hill, Dr. Adam Kaplin, Elaine Hauser and Lynn Palmer Yale University Dr. Leslie Weiner, Dr. Peter Calabresi, Dr. StephenWaxman, Mark Barondess, Lynn Palmer and Dr. Dennis Bourdette 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 Nancy Davis and Sarah Small Dr. Leslie Weiner speaking Mr. & Mrs. Dean Singleton with Kaley Zeitouni 16844_Newsletter.cla 9/5/07 5:24 PM Page 4

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photo gallery DANCE TO ERASE MS April 13, 2007

Robin and Dr. Phil McGraw, Tommy Hilfiger Tommy Hilfiger Virginia Madsen Drew and Nick Lachey Jan Miller and Jeff Rich and Nancy Davis Fashion Show Finale

Donna Summer Katie Brass and Friends Nicky Hilton and Nicole Richie David Horowitz Barbara Davis with and Nancy Davis Ghada Irani and Friend

Nancy Davis with John Rzeznik, Cheryl Burke Earth Wind & Fire and Family Laura and David Jason and Nancy Davis Mike Manlin and Robby Takac and Louis Van Amstel McKenzie

Nancy Davis, Lynn Palmer Suzanne de Passe Molly Sims Julia and Alex Davis Iris and Michael Smith and Brenda Richie and Nancy Davis

Brandon and Nancy Davis Dee Ocleppo Tara Reid Anna, Ray and Ally Romano Nancy Davis, Jennifer Lustig, and Tommy Hilfiger Lynn Palmer, Debbie Lustig 16844_Newsletter.cla 9/5/07 5:25 PM Page 5

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Maria Bell, Tawny, Jerry and Paris Sanders Nancy Davis Joey Fatone Nancy Davis, Arda Yemenidjian, Veronica Caudillo, Tom Arnold and Laura Baumgarten and Ken Rickel and Jennifer Tilly Geraldine Tevrizian and Alex Yemenidjian and Nancy Davis

John Rzeznick Bryan Carter with Friends Dana and Nancy Davis Barbara and Nancy Davis Siran Manoukian, Nancy Davis with Tamar and of the Goo Goo Dolls with Debbie Pattillo Bob Manoukian

Teri Garr Nancy Davis Deb MacMillan and Friends Paul and Lynn Palmer Tommy Hilfiger and and Lyndi Hirsch Donovan Leitch

Andy and Kim Hilfiger with Ken Rickel Lisa Edelstein Guest with Henry Fong and Lara Flynn Boyle Ian Ziering Mary Virginia Knight and Donald Ray Thomas and Nancy Davis

Dolores Robinson, Holly Robinson-Peete Yolanda Hadid, David Foster, Jimmy and Debbie Lustig Sherry Corday (end right) with Friends and Rodney Peete and Lyndie Gorlick 16844_Newsletter.cla 9/5/07 5:25 PM Page 6

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highlights from the lab The Center Without Walls Program Medical Research Update

The Nancy Davis Center Without Walls consists of seven of the top MS centers with complementary expertise in multi- ple sclerosis research. The NDCWW exchanges scientific information and collaborates at multiple levels. Many scien- tific achievements in the past year have continued to fuel the NDCWW’s commitment to find a cure for MS. Scientific meetings provide an open forum for discussion and presentation of novel ideas and findings. Centers with specific expertise provide valuable support to others, each having a unique background and this constant exchange process is nurturing 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 indi- vidual reports. The highlights are presented below:

Cleveland Clinic, Johns Hopkins ease causing white blood cells in MS. Finally they have discovered that block- Director, Richard Rudick, M.D. Directors, Peter Calabresi, M.D. ing a specific protein, called cyclophilin and John Griffin, M.D. The Mellen Center has D, in mitochondria, the energy “facto- ries” in cells, may contribute to protect- found that some immune Permanent disability in communicating mole- ing nerve cells. They will begin testing MS is thought to occur the ability of a drug that blocks cules called chemokines because of irreversible are key in brain inflam- cyclophilin D to prevent nerve damage damage to the nerve in the mouse model of MS. mation but also in repair “wires” called axons. The processes. Identifying team at Johns Hopkins is University of California, which of the chemokine receptors should working towards under- be targeted will result in the development standing how nerves San Francisco of novel treatments. The team at the degenerate and have Director, Stephen Hauser, M.D. Mellen Center has also reported that developed novel ways to nerve cells are transected not only in MS visualize axons and The main goal of UCSF lesions but also in the outmost layer of myelin with magnetic res- team is to unravel the the brain, called cortex. The team has onance imaging. Using genetic makeup that con- identified resident immune cells of the animal models of MS, the team has vey susceptibility to MS brain that play an important role in pro- found that loss of MAG, the innermost and dictate the severity of tecting the brain from injury. part of the myelin sheath, results in the disease. Multiple col- increased nerve damage. By understand- laborations within the Harvard Brigham and ing how myelin proteins normally pro- Center Without Walls (OHSU and Johns Women’s Hospital, tect nerves, they may be able to develop Hopkins) allow for outstanding recruit- new neuroprotective therapies. ment of patient samples from various Director, Howard Weiner, M.D. populations with various risks to develop Oregon Health Sciences MS. The team has observed a higher than The team at Harvard is expected co-occurrence of other autoim- analyzing the linkage of University mune disorders, both in the individual certain blood and MRI Director, Dennis Bourdette, M.D. affected by MS and their relatives. Our markers with MS activity new exciting finding that a functional and response to MS In the past year, the team variant of the interleukine-7 receptor is a drugs. The team has also at OHSU has discovered risk allele for MS highlights the need for combined MRI measures that vaccination with part large cohorts and justifies a sense of of disease severity for predicting disease of the receptor located on optimism that the genetic approach will progression in patients with MS. In addi- immune cells called T be increasingly productive with the new tion to developing new blood test for cells can boost protective generation of tools now available. MS, the team is investigating the role of white blood cells. This USCF has also been part of a team, led neural stem cells during brain inflamma- has resulted in initiating a clinical trial in by an international consortium of clinical tion, so deleterious processes can be MS. The team has also engineered a pro- scientists and genomics experts, that identified and inhibited in MS. tein called RTC1000 that can “stun” dis- have incorporated the two largest collec- 16844_Newsletter.cla 9/5/07 5:25 PM Page 7

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tions of MS genetic information world- wide and is the first comprehensive Rituximab (Rituxan) Update study to investigate the overall genetic Courtsey of UCSF basis of MS. Two new large-scale genomic studies have honed in on the Rituximab, a drug approved for non- treatment, and be maintained for up to 48 main genetic pathway associated with Hodgkin lymphoma since 1997 and months. multiple sclerosis (MS), while also rheumatoid arthritis since 2006, is being In addition, patients who received ritux- uncovering new genetic variations in the evaluated as a new treatment for MS. imab had a two-fold reduction of their disease and suggesting a possible link risk to develop an MS relapse compared between MS and other autoimmune dis- It targets specifically B cells, the cells to placebo. Overall, rituximab was safe. eases. making antibodies that provide some of Main side effects consisted in infusion the long term immune protection from related symptoms (e.g. symptoms that University of Southern infections. Under pathological condi- occur during the infusion or within 24h California, Los Angeles tions, B cells appear to also promote of an infusion). These side effects inflammatory reactions in several auto- include chills, fever, headaches, and tran- Director, Leslie P.Weiner, M.D. immune disorders including MS. sient blood pressure drop, and are usual- ly mild or moderate in severity when The team at USC Center is Rituximab that belongs to the drug fami- using a preventative treatment such as evaluating the role stem ly called "monoclonal antibodies" was Tylenol and benedryl. These symptoms cells may play in brain used in a trial of 104 patients with relaps- mostly occur with the first infusion. repair and regeneration. ing remitting MS, most of whom had The team at USC has stud- failed interferon or copaxone. Patients Because of these dramatic results, the ied differentiation bio- were randomized to receive two infu- company making the drug, Genentech, markers that control how sions of rituximab or placebo (an inac- will move forward with two large inter- stem cells will develop into various brain tive compound) 2 weeks apart and were national pivotal trials that will help con- cell types that could be used for repair. followed for one year with regular brain firm efficacy and safety of rituximab The team also studies brain cell injury MRI scans, blood tests and clinical eval- before going to the FDA for approval. utilizing micro chambers in which they uations. cultivate single brain cells exposed to Finally, another study with rituximab is various immune factors or growth fac- Twenty four weeks after treatment was almost completed in a large group of tors. Finally the team is studying viruses administered, the number of new brain patients with primary progressive MS, a as potential MS triggers. MS lesions was dramatically reduced form of MS for which there is currently compared to placebo (90% reduction). no approved therapy. The results of this Yale University The MRI effect seems to occur rapidly, study are expected for the end of 2007. Director, Stephen Waxman, M.D. e.g. within the first month or two after

The goal of the team at the Yale Center is to restore Stem Cells and MS and protect neurological Dr. Leslie Weiner, USC function in animal models of MS and translate such The Nancy Davis group at USC has been myelin proteins. We have found that cer- discoveries toward effec- studying neural stem cells and oligoden- tain chemokines and other inflammatory tive treatments for people drocytes precursor cells derived from molecules will increase MyT1 and could with MS. Key objectives are to investi- stem cells. The purpose is to characterize play a role in preventing repair in MS by gate the potential of cell-based approach- cells that will eventually be prototypes keeping cells from going on to form es in the repair of central myelin damage for transplantation into the brain and myelin. There are many precursor cells and in the restoration of nerve impulse spinal cord of selected MS patients. in the MS patients' brain, but there is fail- conduction in MS; to preserve neurologi- ure to remyelinate for the most part. cal function in the injured brain and One important finding is the expression These same cells do express high levels spinal cord via novel strategies that pro- in human cells of a key gene for myelin of MyT1 in MS patients' brain. We are tect axons so that they do not degenerate; formation. This gene is myelin transcrip- currently trying to engineer human stem to study the molecular makeup associated tion factor (MyT1). When it is expressed cells to modulate the expression of this with poor nerve impulse conduction in the myelin precursor cells will continue important factor. We hope that manipula- MS, and identify strategies that will to divide and will not differentiate into a tion will promote myelin repair at the restore normal conduction within myelin forming cell. When expression is time cells are transplanted into the demyelinated axons. decreased the cells will begin to produce human nervous system. 16844_Newsletter.cla 9/5/07 5:25 PM Page 8

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The Center Without Walls: Group Overview of Clinical Trial Projects

COLLABORATIVE compared to placebo. These exciting Solumedrol pulses. STUDIES results were presented at the American Academy of Neurology in Boston in May Ongoing Studies The Center Without Walls has several by Dr Hauser. Rituximab is administered collaborative studies under way in vari- intravenously every six months. It is The NDCWW has continued or initiated ous stages of development. FDA approved for non-Hodgkin lym- patient enrollment in several collabora- phoma and rheumatoid arthritis, and is tive clinical trials of oral medications for Studies Completed In Past Year well tolerated except for mild to moder- MS that have been designed by the ate infusion-related reactions. The small NDCWW: Oral interferon tau: phase I study of re-treatment with ritux- - Lipitor in early MS Twenty eight patients with relapsing imab confirms safety in 26 patients, and - Memantine for cognitive impairment in remitting MS or clinically isolated syn- shows that the benefit of rituximab is MS dromes suggestive of early MS have par- maintained until the end of the first year ticipated in this study at four of the of therapy upon re-treatment. These very The Center has also continued the col- Centers (Harvard, OHSU, USC and encouraging results will be confirmed in laborative study of a novel intravenous UCSF). Oral interferon tau taken during a large phase III trial expected to start in drug, rituximab, in primary progressive nine months has been well tolerated. Jeff 2008 that will hopefully lead to FDA- MS. Cohen at the Cleveland Clinic served on approval of this drug for patients who the Data and Safety Monitoring Board. have relapsing forms of MS. Lipitor (atorvastin) for patients with Preliminary analysis suggests that oral early multiple sclerosis: interferon tau decreases MS activity on Add-on therapy for patients doing Seventy four patients have been enrolled serial brain MRI scans by approximately poorly on interferon therapy: nationwide in this study. We are planning 60%. Final analysis will be provided for This study, headed by the Cleveland MS to enroll 152 patients with their very first the third quarter of 2007. A randomized center and sponsored by Biogen Idec, is MS event and monitor for one year the phase II study is expected to start within the first large pivotal study of combina- effect of Lipitor compared to placebo. the next few months. Oral interferon may tion therapy. Dr. Calabresi at Johns With this study, 6 of the Centers (UCSF, turn out to be comparable to approved Hopkins participated to the Data and Cleveland, USC, Yale, OHSU and Johns interferon beta with fewer side effects, Safety Monitoring Board for this study. Hopkins) are following up on the excit- and it is easier to administer. Six of the Centers (Cleveland, UCSF, ing work in animal models suggesting USC, Yale, Johns Hopkins and OHSU) that Lipitor significantly decreases the Treatment that decreases B cells and have participated in this trial that com- activation of the immune system that antibodies against the nervous system: pared the benefits of adding monthly occurs in MS. Since Lipitor may also All seven Centers have been involved in Solumedrol or oral methotrexate to have neuroprotective properties, the cen- a new treatment strategy using rituximab, Avonex in patients who experienced ters use spectroscopy, a sophisticated a monoclonal antibody against the B cell exacerbations while on Avonex. The magnetic resonance technique, to deter- marker CD20 that depletes B cells for results of this study were presented at the mine whether Lipitor prevents brain over six months after the first course of American Academy of Neurology in damage. This is an exciting trial, as the treatment. B cells are believed to partici- Boston in May by Dr. Cohen from the medication is given orally and is much pate to MS brain inflammation and make Cleveland Clinic. The study shows that safer than many immunologic therapies antibodies against constituents of the patients who received IV Solumedrol considered for MS. This is also one of brain. The results of the randomized, pulses in addition to Avonex, or Avonex the first times the CWW centers are able placebo controlled phase II trial estab- and methotrexate tended to develop less to share their advanced magnetic reso- lishes for the first time the role of B cells new lesions on the follow-up brain MRI nance technology. The study designed by as key players during MS inflammation scan at one year compared to patients UCSF is sponsored by the Immune in 104 patients with relapsing remitting who received Avonex only, or Avonex Tolerance Network, Biogen Idec and MS (Protocol Chairs: Drs Stephen and methotrexate. This has direct impli- Pfizer. Hauser and Emmanuelle Waubant, cations for the treatment of patients who UCSF). Depleting B cells with one respond incompletely to Avonex as Memantine for MS cognitive impair- course of rituximab decreases disease physicians may now stop adding oral ment: activity on serial brain MRI scans by methotrexate to Avonex, and will instead This year OHSU, in collaboration with 90% and lessens relapses by over 50% prefer to combine Avonex to IV USC, has conducted a double blind 16844_Newsletter.cla 9/5/07 5:25 PM Page 9

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placebo-controlled pilot trial of meman- changes in the immune markers in the been enrolled in the study since January tine for cognitive impairment in MS. blood. 2007. A total of 40 patients will partici- Memantine is a glutamate receptor pate to this study at UCSF. Sanofi- antagonist that has been shown to Sodium channel expression within Aventis is providing free riluzole and improve cognition in Alzheimer's dis- human MS lesions: placebo, and Biogen Idec is providing ease. This trial is designed to assess Yale and Cleveland are examining the free interferon beta-1a. It is likely that whether memantine will improve cogni- slow burn of axons in chronic lesions OHSU will collaborate to this project if tion among MS patients. Eighty patients which have been implicated to play a enrollment is slow at UCSF. have already been enrolled in the study. major role in MS disability. Salbutamol and Copaxone: Treatment that decreases B cells and SINGLE-SITE PILOT Following the finding that Salbutamol antibodies: (used in asthma) decreases the release of The large double blind trial that will STUDIES IL-12, a pro-inflammatory product that is evaluate the efficacy of rituximab in Some very novel agents are currently deleterious in MS, the group at Harvard patients with primary progressive MS being developed by individual NDCWW has continued with their study of over two years (Protocol Chairs: centers. Single-site studies serve the valu- Copaxone plus Salbutamol to determine Kathleen Hawker, Cincinnati and Jack able function of deriving preliminary data if the association enhances the anti- Antel, Montreal) is almost completed. that, if encouraging, will come to fruition inflammatory effect of Salbutamol. Being Over 400 patients are participating. We as larger collaborative trials. able to decrease the release of the pro- anticipate the results to be available by inflammatory product could prevent early 2008. If this study is positive, rit- Studies Completed In Past Year exacerbations of MS. Four patients are uximab could become the first therapy still in this study and will complete par- for primary progressive MS. Genentech, The Oregon Health Center has completed ticipation by December 2007. the study sponsor, has agreed to support the analysis of a single-site study of vac- state-of-the-art immunological studies cination with a portion of the T cell recep- Omega-3 fatty acid in the treatment of that will help understand the role of B tor, Neurovax, that is well tolerated in depression and as an immunomodula- cells in MS and the effect of the medica- patients with MS. This vaccine triggers a tor: tion. vigorous immune response to the vaccine OHSU is continuing with the study of and boosts regulatory cells in most omega-3 fatty acid in the treatment of Recombinant T Cell Ligand Therapy: patients. Further, two patients who react- depression in patients with MS and is also Two of the Centers, OHSU and Yale, ed against brain myelin lost their reactiv- evaluating how this compound modulates have initiated a Phase I safety and dose ity on treatment. This study has provided the immune system in a way that could finding study of the DR2-MOG 35-55 data needed to successfully design the benefit to MS. RTL, referred to as RTL1000. Patients follow-up trial of this vaccine in MS. with MS and who are positive for a spe- American ginseng for MS fatigue: cific marker (DR2+) will receive single The group at OHSU has completed a OHSU is continuing the study with i.v. infusions of RTL1000 of increasing study of three different formulations of American ginseng for treatment of MS doses (6-300 mg). The first patient has oral alpha lipoic acid in which 24 patients fatigue. Twenty seven patients are cur- been enrolled. Outcomes will be safety, participated. One of the formulation gave rently participating to this trial. including MRI monitoring for disease the highest plasma levels of lipoic acid. activation and antibody formation to the This will lead to a study combining lipoic High dose cyclophosphamide study: RTL1000. This is the first step in devel- acid and interferon in patients with sec- Nine patients have been treated at Johns oping RTL1000 as a novel immunother- ondary progressive MS. Hopkins with immunoablative doses of apy for MS. IV cyclophosphamide in patients with Ongoing Studies RRMS refractive to other therapies. The Studies About to Start study will enroll a total of 10 patients. Neuroprotection with riluzole in early CTLA4-Ig: MS: Studies About to Start Harvard is planning a multicenter phase UCSF has initiated one of the first studies II trial with CTL4-Ig based on the data with a neuroprotective drug, riluzole, in Alpha Lipoic acid: reported last year for the phase I trial patients with early MS. Riluzole is an OHSU will test the pharmacokinetics of done at their center. CTLA-4Ig blocks T approved drug already shown to slow two other oral alpha lipoic acid formula- cell activation and suppresses inflamma- down Lou Gehrig's disease. Patients tions in the coming year so they can tion. The data from the pilot study receive two year therapy with riluzole or choose the best compound for the trial of showed that CTLA-4Ig is safe in MS and placebo in addition to interferon beta-1a oral lipoic acid as an adjuvant therapy to there is evidence of biologic activity by as a standard of care. Five patients have (TRIALS continued on Page 11 16844_Newsletter.cla 9/5/07 5:25 PM Page 10

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ms health tips and resources MS Reference to Make Vitamin D and MS Heat Busters Life Easier Vitamin D supplements may positively Heat can cause symptoms to appear or Multiple Sclerosis: 300 Tips for Making influence the immune systems of patients make the ones you already have feel Life Easier, 2nd Edition by Shelly with multiple sclerosis, Vitamin D status worse. It can affect walking, thinking, Peterman Schwarz affects chemicals that modulate the strength and energy levels. immune system called cytokines, and There are exactly 300 tips in this book to these changes may benefit patients with As many as 60 to 80 percent of people make life easier with MS. Schwarz multiple sclerosis. with MS have had heat-related symp- divides tips up into seven different cate- toms. One theory suggests that damaged gories, each of which gets its own chap- A report from the long-running Nurses nerves may conduct electrical impulses ter: General Tips; In Your Home; Look Health Study, from researchers at adequately under ideal temperatures but ing Good, Feeling Better; Managing Harvard Medical School, now seems to higher temperatures can interfere with Mealtime Madness; Taking Care of back this theory. Women who had the the process. YOU; Managing Medical Issues; highest vitamin D intakes, from supple- Weekend Getaways and Extended ments, were 40 per cent less likely to Fortunately, the effects of heat are usual- Travel. develop multiple sclerosis than those ly temporary. With hot weather, take time who used no supplements. The risk was to assess your own sensitivity and find Chapter 2, "In Your Home," begins with found to be lowered among those getting strategies that help you ease the effects tip number 18: Rubber Bands. Yes, rub- most of their vitamin D from supple- of heat: ber bands. As Schwarz writes: "Rubber ments and those who relied on supple- bands can add girth to handles on kitchen ments and diet for the vitamin. However, Stay in an air-conditioned environment tools, hairbrushes and toothbrushes, and this study does not allow to conclude that during periods of extreme heat and other household objects. Try adding rub- vitamin D has a beneficial influence on humidity. If an air conditioner is needed ber bands anywhere you need a little ongoing multiple sclerosis. Furthermore to help minimize the symptoms of MS, extra help gripping." it could not distinguish between a benefi- the cost may be tax deductible if a physi- cial effect of vitamin D and multivitamin cian has written a prescription for it. Use These are real-world practical strategies. drugs including vitamin E and various B cooling products (vests, neck wraps, ban- Each chapter includes a resource list to vitamins which may also exert a protec- danas, etc.) during exercise or outdoor easily locate anything that sounds partic- tive effect. activity. ularly useful.Excerpt Review from Inside MS, August-Sept, 2006 by Dana http://neurology.health-cares.net/multi- Exercise in a cool environment. Pick Bard ple-sclerosis-vitamin.php cooler times of the day or use air condi- tioning or a fan to help maintain body temperature. Before You Fly MSFriends Anyone with any disability has the right MSFriends offers the first 24/7 peer sup- Also, exercising in a cool pool. Wear to travel in comfort, and you should port telephone helpline, staffed with vol- lightweight, light-colored, loose, breath- know that there are resources out there to unteers who have MS. "Friends Helping able cotton clothing and wide brimmed ensure your next flight is accommodating Friends" is a lifeline that is immediate hats. Drink plenty of water. Icy drinks to your specific needs. and offers MSFriends Guided Outreach such as slurpees or popsicles can provide to anyone, anywhere in the Continental temporary relief. A cool bath or shower The US Department of Transportation USA at 1-866-MSFRIENDS (1-866- can help reduce core body temperature (DOT) has a toll free hotline for Air 673-7436) following activity or exposure to heat. Travelers with Disabilities (800-778- 4838). The hotline has two main purpos- MSFriends offers online 1:1 peer support Don't be discouraged by the heat of the es: (1) education and (2) assistance in chat from 9:00 AM to 5:00 PM ET summer months. Find the strategies that resolving disability related air-travel Monday through Friday. work best for you, because you can beat problems. Hotline operators are schooled the heat! in the Air Carrier Access Act and can pro- MSFriends has a primary mission: to vide travelers with general information improve the quality of life for people http://afterenlightenment.blogspot.com/2 about your rights. A suggested website with Multiple Sclerosis, for their families 007/05/managing-ms-beating-heat.html that you can use as a resource: and friends. For more information visit: http://www.flying-with-disability.org/. www.msfriends.org 16844_Newsletter.cla 9/5/07 5:25 PM Page 11

FALL 2007 PAGE 11

Beat Fatigue Stress and MS (RACE continued from Page 1) The best way to alleviate and manage Disruption of the blood-brain barrier is Tom Arnold and Ross "The Intern" from fatigue is to maintain a regular exercise thought to be involved in the develop- The Tonight Show raised much needed program. ment of multiple sclerosis (MS). The funds as celebrity auctioneers at the breakdown of this barrier precedes any night's exciting live auction. The high- If you have trouble with walking or with clinical findings. Acute stress actually energy auction featured a spectacular list weight resistance, swimming is a great increases the permeability of the blood- of luxury items including a private dance way to get exercise without putting a brain barrier through activation of brain lesson with Drew Lachey and Cheryl strain on your limbs. mast cells. Burke from "Dancing with the Stars" and a fabulous trip to St. Regis Bora Bora Also, it is important to conserve energy There is some evidence that relapsing- which included airfare on American when you know you will need a lot and in remitting MS attacks may be correlated Airlines. severe cases there are some medications with certain types of acute stressful on the market they may help with MS episodes. Stress typically activates the Among the guests were such superstars fatigue. brain through the release of a corti- as Virginia Madsen, Apolo Anton Ohno, cotropin-releasing hormone. However, Joey Fatone, Nick and Drew Lachey, Ray Nutrition acute stress also has inflammatory Romano, Ian Ziering and Michelle effects that appear to be mediated Rodriguez. It is suggested that multiple sclerosis through the activation of mast cells. patients make an effort to reduce their Thank you to sponsors Makers Mark, Fiji intake of saturated fat and eliminate trans Many MS patients have correlated their Water, Wolf Blass Wine, Sapporo and fats from their diets. These fats increase exacerbations with major stressful events Pierre Marcolini Chocolatier as well as inflammation in your body and can wors- such as divorce, car accidents or major Frederic Fekkai and MAC who created en MS symptoms. Try to eat fatty fish illnesses or deaths in a family preceding the amazing hair and makeup for the and other products such as flax oil, months to their attack. fashion show. ground flaxseeds, and walnuts which contain a natural anti-inflammatory Source: MS Highlights, Issue 2, Vol.4- Thank you again to everyone involved in omega-3 fat. Other healthful monounsat- 2001 helping to make this evening such a urated fats include extra virgin olive oil, grand success. Save the date May 2, all-natural nut butters, dry roasted or raw When stress does manifest itself physi- 2008 for our 15th Anniversary event! nuts and seeds, olives, and avocados. cally, it may cause muscles to tense up, Aim to eat nutrient rich carbohydrates as leading to muscle spasms and poor bal- (TRIALS continued from Page 9) opposed to nutrient-poor carbohydrates. ance. Mentally, it may cause depression oral lipoic acid as an adjuvant therapy to This means choosing unrefined carbohy- or enhance symptoms causing a pseudo- interferon beta for patients with second- drates such as whole grains, whole wheat exacerbation. For these reasons, it is ary progressive MS. flour, beans, potatoes, corn, fruits, and important to manage stress day-by-day vegetables over processed foods contain- and not let it build up. ing refined flour and sugar. Ginkgo Biloba for cognitive impair- ment in MS: There are many ways of coping with OHSU is about to start a study in 100 Supplementation with a high quality stress, such as excercise, meditation, patients that will test Ginkgo compared to multivitamin/ multi-mineral, calcium, soothing music, positive thinking exer- placebo for six months as a treatment of vitamin D, and essential fats such as the cises, counseling or therapy sessions. GLA found in evening primrose oil and cognitive problems related to MS. the EPA and DHA found in fish oil is also Source: Sarah Beaubien important. Finally, in order to minimize http://ms.about.com/b/a/2005_07_25.htm CTLA4-Ig: the negative functional effects of minor Harvard is planning a phase II trial with relapses it is vital to develop baseline CTL4-Ig based on the data reported last musculoskeletal strength and balance year for the phase I trial. through resistance training exercises such as yoga or light weight training. Anti-CD3 therapy: You should exercise in this manner for Harvard is planning a phase I trial with about 30 minutes three times per week. oral anti-CD3 monoclonal antibody that suppresses the animal model for MS. Source: The Gold Coast Cure, This study will evaluate several doses of Publisher Health Communications, Inc. the medication and will determine if the therapy induces regulatory cells in the blood. 16844_Newsletter.cla 9/5/07 5:25 PM Page 12

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photo gallery, continued dance to erase ms

Perry, Lynn Palmer, Tom Arnold Tara, Iris and Kaily Verdine White, Ralph Johnson, Nancy Davis, Virginia Madsen, Tommy Nancy Davis, Jerry Sanders and Jon Lovitz Smith Donna Summer and Philip Bailey Hilfiger and Dee Ocleppo and Laura Baumgarten

Stacy Keibler Autumn Bates with Friends Lisa Rinna Apolo Anton Ohno Nicky Hilton Suzie Sharrett and Nancy Davis and Julianne Hough and Nicole Richie and Paul Sharrett

Charles and Danica Perez, Iris Smith, Lynn Palmer, Dee Ocleppo, Tommy Barbara Davis, Marcy Taub, Nancy Davis, Friends with Cammie MacMillan, David Foster and Yolanda Hadid Hilfiger, Nancy Davis and Ken Rickel Kelsey Baker, Elaine Tack, Ann Cassidy Jennifer Lustig and Michael Gardner

Chad Brownstein, Alexander and Julia Davis, Karen Shaun Robinson Guest with Jason Davis, Wanda Ruddy and Guest Sempertegui, Matt Winnick and Cass Brownstein and Keisha Whitaker Que, and Bradley Spalter

Larry and Kelly Thompson Richard Hilfiger and Friends Laura and David McKenzie Seth Green and Guest Steven Cojocaru, with Guests Cindy and Steven Farber 16844_Newsletter.cla 9/5/07 5:26 PM Page 13

FALL 2007 PAGE 13

Jonathan Spanier, Gary Shapiro Drew and Nick Lachey Steven Farber, Dr. James Sherman Tommy Hilfiger and Richard Hilfiger Joey Lawrence and Paul Rosenberg and Nancy Davis

Dennis Flynn, Ken Rickel and Paul Michelle Rodriguez Jon Vinnick and Family Sela Ward Mark and Rose Barondess Rosenberg with Friend and Jack Rich and Nancy Davis with Friends

Digby Diehl and Kay Diehl Verdine White Leonard III, Maria Constance Zimmer Shelly Uncer, Chitra Kirshnan of Earth, Wind & Fire and Lenny Tambasco and Cody Uncer

Mr. and Mrs. John Duran Tracy Danza with Dr. Brent Moelleken Tia Carrere, Stacy Keibler, Giuliana DePandi, Daisy Melissa George Tom and Nancy Arnost and Dayna Devon Fuentes, Lisa Rinna, Tara Reid, Keisha Whitaker

Guest with Dr. and Mrs. Andrew Frankel Bill Rancic Dr. Dennis Bourdette, John Elrod Chad and Cass Brownstein and Giulana dePandi Dr. Stephen Hauser and Guests and Becky Hernreich 16844_Newsletter.cla 9/5/07 5:26 PM Page 14

PAGE 14 FALL 2007

brain exercise CROSSWORD PUZZLE MULTIPLE SCLEROSIS: Strikes twice as many women as men

Is extremely unpredictable

Diagnosed most often between ages 20 to 50

Can be permanently debilitating

Most common cause of neurological disability (excluding trauma) arising in early middle adulthood

TRIBUTE CARD PROGRAM

Pay tribute to friends and family for special occasions and help us win the RACE to Erase MS!

We will send a card with your per- sonal message to your friends and family on your behalf. It is a thoughtful gesture for a Birthday, Anniversary, Thank You, Speedy Recovery or any occasion.

See the self mailer included in this newsletter or gifts can be made by calling our office at (310) 440-4842.

For answers to crossword puzzle, please visit www.erasems.org 16844_Newsletter.cla 9/5/07 5:26 PM Page 15

FALL 2007 PAGE 15

Risk Genes for MS Uncovered: Protect Yourself Center Without Walls Supported Study and Your Family Two new large-scale genomic studies England. The team analyzed genomic have honed in on the main genetic path- information from 12,360 people and con- way associated with multiple sclerosis firmed that immune system genes are (MS), while also uncovering new genetic altered in people diagnosed with MS. It variations in the disease and suggesting a also pointed to potential mechanisms of possible link between MS and other the disease. Until now, the only genetic autoimmune diseases. The first study, link identified with MS was in the major led by an international consortium of histocompatibility complex (MHC), a clinical scientists and genomics experts, large cluster of genes responsible for incorporates the two largest collections many immune functions, including pre- Every year 98,000 people in the United of MS genetic information worldwide venting the body’s immune cells from States die from preventable medical mis- and is the first comprehensive study to attacking its own tissues. This analysis takes and 400,000 people are injured by investigate the overall genetic basis of confirmed that link while also finding these mistakes making this the sixth MS. Its findings appear in the July 29, other variants in genetic regions that are leading cause of death in our country. 2007 online edition of the “New England more common in people with MS. Journal of Medicine”. My Very Necessary Medical I.D. Card™, These advances are an outgrowth of a 15- now available is an essential part of the Another study is being published simul- year effort at UCSF to create a national book "Lean on Me," by Nancy Davis, as taneously on the web site of “Nature repository of more than 10,000 samples a key to empower yourself and take Genetics,” and focuses on one variant in of DNA from people with MS and their charge of your health and the welfare of a gene called interleukin-7 receptor (IL- families, the largest such collection your loved ones. 7R), which researchers had thought was nationwide. A similar database, in both connected to the disease and now know quantity and quality, had been developed BE PROACTIVE: My Very Necessary increases the risk of MS. “Scientists at the University of Cambridge, in Medical I.D. Card™ can help reduce the have known for 30 years that genetics England. Both collections were used for margin of error in an emergency by pro- play a critical role in MS, but the disease both of these studies. viding critical information when a patient is influenced by so many different factors is unable to speak for himself. You can't that it has consistently eluded us,” said But the real breakthroughs came through plan for these moments, but you can be Stephen Hauser, MD, professor of neu- collaboration. Hauser said that individu- prepared. rology at the UCSF and an author on ally, none of the six centers in the con- both papers. “It wasn’t until we could sortium could have completed a study of My Very Necessary Medical I.D. Card™ map genomes and then combine the this scale and complexity, but funding fits easily in your wallet and contains efforts of dozens of researchers, that we they were able to form a truly effective your most essential medical information could put all the pieces together.” international consortium that could in case of an emergency when you can't deliver the most exhaustive search for speak for yourself. Our service allows Together, he said, these two papers illus- MS risk factors ever published. you to store and retrieve your medical and trate how scientific collaboration and the legal records and will assist in reducing recent breakthroughs in genomic tech- The international collaboration is cur- healthcare inefficiencies, limit the possi- nology, which make it possible to both rently planning even larger and more bility of medical errors, and ensure one's screen an individual’s genetic architec- detailed explorations of the genetic land- legal wishes. We have developed a safe ture and understand the differences, can scape of MS and is now committed to and secure method to organize, store, and open up an age-old disease such as mul- making the entire data set available to immediately access one's important med- tiple sclerosis. It is significant that the MS researchers worldwide. ical information and legal wishes from two studies used very different approach- anywhere in the world by using the inter- es, but both highlighted the role of IL- This work was supported by grants from net or calling one of our customer service 7R, he said. The Nancy Davis Center Without Walls, associates 24/7. My Very Necessary the National Multiple Sclerosis Society, Medical I.D. Card™ has partnered with The consortium study, reported in National Institutes of Health, the and the AccessMyRecords.comSM to offer you NEJM, was co-led by researchers at Penates Foundation. this valuable service. UCSF and five other universities and medical centers in the United States and For more information on UCSF, visit www.vnmedical-idcard.com www.ucsf.edu. 800-796-6431 16844_Newsletter.cla 9/5/07 5:26 PM Page 16

FALL 2007 PAGE 16 15th ANNIVERSARY EVENT Friday, May 2, 2008 Hyatt Regency Century Plaza Join us for our Crystal Year! For more information please call 310-440-4842 or visit www.erasems.org MISSION STATEMENT The Nancy Davis Foundation for 2008 MS Roundtable multiple sclerosis is dedicated to the treatment and ultimate cure of Saturday, May 3rd MS. Funding research is the core focus of the Foundation and signif- Hyatt Regency Century Plaza icant strides have been made to Free to public. Open forum with our top MS research find the cause and ultimate cure of scientists speaking on the latest advancement in MS. this devastating disease.

All funds raised support "The Major Sponsors Nancy Davis Center Without Walls", a selected network of the Thank you for your generous support! nation's top seven MS research centers. This nationwide collabo- ration of physicians, scientists and clinicians are on the cutting-edge of innovative research programs and therapeutic approaches to eradicate MS. It is the hope of the ASSOCIATED Foundation that in addition to com- TELEVISION INTERNATIONAL bating MS through research in a clinical environment, an increased awareness will be created by edu- cating the public about this mysti- fying 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. Recycled Paper