Winter 2010 - MSConnection

MOVING TOWARD A WORLD FREE OF MS | 2010 • WINTER • VOL 1

INSIDE THIS ISSUE

PACIFIC SOUTH COAST CHAPTER

JOIN THE MOVEMENT® - PARTICIPATE IN WALK MSAt age 32, Point Loma resident Shauna Woodward suddenly began experiencing a “tipped” feeling. “Everything was tipped to the side, and I just couldn’t right myself,” recalls Shauna. Shortly thereafter, the left side of her face began to feel cool and tingly, and she constantly drifted to the right – whether driving or walking. After losing the sight in her left eye and undergoing an MRI, Shauna was diagnosed with multiple sclerosis. “I was most afraid of the treatments,” says Shauna, “since I’m terrified of needles.”

Shauna gathered her family together to join her at Walk MS. “The first year I walked, I was amazed that all those people were there and they were walking for me,” she says.

MOREINFOApril 10 University of California, IrvineApril 24 NTC Park, San DiegoApril 25 LEGOLAND® California, Carlsbadwww.MSwalk.com

MS Outpatient Program at Scripps PAgE 3

Walk MS PAgE 5

Volunteers Make It Happen PAgE 14

Research Progress 2009 PAgE 16-19

“When you’re diagnosed, you feel really alone. The Walk gave me the sense

that I’m not alone.”

Over the last ten years, Shauna’s Walk MS team “Shining for Shauna” has grown from just the family to nearly 30 members including colleagues, friends, family and friends of friends. The team is well on their way to reaching their $4,605 goal this year. In addition to the team’s online and traditional fundraising

INSIDELOOKGolden Circle PAGE 4

An MS Pain Checklist PAGE 9

efforts, every year Shauna’s cousin creates a new T-shirt for the event. Each member of the team has to purchase the shirt (make a donation) in order to join the team. Continued on page 5

Shauna (center) with her teammates at Walk MS 2009

MS GOLF CLASSIC JOIN THE FUN MAY 3RD!

2 | JOIN THE MOVEMENT: nationalMSsociety.org

(800) 344-4867

PUbLICATION OF THE NATIONAL MULTIPLE SCLEROSIS SOCIETy Pacific South Coast Chapter

Chapter Offices: 5950 La Place Court, Suite 200 Carlsbad, California 92008

3000-C Airway Avenue, Suite 125 Costa Mesa, California 92626

Vice President, Programs & Services Karen Hooper

HELP THE CHAPTER SAVE PRINTING & POSTAGE COSTS! To receive this publication via email, send an email to [email protected] with “Email me the MSConnection” in the subject line. You’ll save paper (and therefore trees) as well!

The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are consid-ered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned.

Information provided by the Society is based upon professional advice, published, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recom-mendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician.

We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.

© 2010 National Multiple Sclerosis Society, Pacific South Coast Chapter


Golfers, join Honorary Chair Coach Norv Turner and the San Diego Chargers in taking a swing at MS – on Monday, May 3, at the 16th Annual MS Golf Classic. Located at the prestigious La Jolla Country Club, the event hosts a maximum of 120 players and always sells out early – so reserve your spot now! Player slots are available on a first-come, first-serve basis. Foursomes will consist of flights for men, ladies and mixed. Entry donation includes green fees, cart, lunch, special tee gifts and prizes, an after-golf reception, gourmet awards dinner and a live auction. For more information or sponsorship opportunities, contact Angela Northrup at (760) 448-8434 or at [email protected] or visit www.mspacific.org.

La Jolla Country Club

PROGRAMS & SERVICES

TOLL FREE NUMbER 1 800 344 4867 | 3

3rd Annual

Multidisciplinary Medical Education Conference

FA C U LT Y Mark Freedman, MSc, MD

Allen Bowling, MD, PhD Ralph Benedict, PhD Kimberly Calder, MPS Darin Okuda, MD

June Halper, APN-C, MSCN Lauren Krupp, MD

Register Today! 1-800-344-4867 option 2 orhttp://aza.nationalMSsociety.org

MS 2010MAXIMIZING CARE STRATEGIES

MS National Multiple Sclerosis SocietyArizona Chapter

Saturday, March 13, 2010 Arizona Biltmore Phoenix, Arizona

Approval pending for 6 hours of continuing medical education credits

THE REHAbILITAION CENTER AT SCRIPPS ENCINITAS MS OuTPATIENT PROGRAMFor many MS patients, sometimes the most challenging aspect of managing MS is not MS itself, but managing the impact it has on day-to-day life. The MS Outpatient Program at Scripps Memorial Hospital Encinitas is a comprehensive functional evaluation that helps patients assess everything from functional mobility to nutritional evaluations – all with the convenience of a single appointment and location.

At their appointment, patients receive a customized evaluation based on their individual needs. Areas assessed include:

• Functional mobility • Gait/balance safety • Daily living activities and adaptations • Patient/family education • Reentry into the community • Pre-driving assessments • Energy conservation • Work simplification • Bladder-control issues • Cognitive/linguistic evaluation • Swallowing function • Nutritional evaluations and spiritual support (on request)

An evaluation takes approximately three hours, not including a pre-evaluation phone interview to prepare for the appointment. After the appointment, our rehabilitation team provides participants’ physicians with a detailed evaluation, including strengths, affected functional areas and barriers to goal achievement, along with recommendations, referrals and educational resources. The evaluations are based on the recommendations of physical therapists, occupational therapists, speech therapists, along with social workers and dietitians, all highly skilled professionals who have been chosen for their expertise in MS.

A leader of the diagnosis, treatment and management of neuroscience-related conditions, The Rehabilitation Center at Scripps Memorial Hospital Encinitas has served as the only comprehensive rehabilitation facility in northern San Diego County, providing a full range of quality inpatient and outpatient care since 1987.

For more information or to schedule an evaluation with the MS Outpatient Program or any of our other programs, please call 760-633-6507. Participants must have a prescription from a physician and prior authorization from their insurance company. A limited number of opportunities are also available for patients without insurance coverage. The program runs on the first Saturday of each month.

The Golden Circle, a special place for people with a special commitment to a world free of MS. When you give to the Golden Circle, your gift directly supports the MS community. Please put your compassion to work by

SuPPORTING THE MISSION


MAkE NEW FRIENdS ANd TRAIN TO COMPLETE yOUR dREAM MARATHON OR TRIATHLON WHILE SUPPORTINg A gREAT CAUSE IN THE RACE TO STOP MS.

The National MS Society, Pacific South Coast Chapter will provide you with professional personalized training (both group and one-on-one) to prepare you for a marathon or full triathlon. Or you can choose the Race to Stop MS: Relay participate by being in one “leg” of a triathlon. Swim, bike or run: you decide which portion of the relay you feel most comfortable doing. Invite your family and friends to join your relay team or make one of their own. Whatever you decide to do, know that the funds you raise go to create a world free of MS. For more information, visit www.racetostopms.com or contact Nicole Pearson at (760) 448-8422 or [email protected].

ensuring that your name appears among the distinguished Golden Circle individuals, organizations, businesses and civic leaders. Yes! I will Join the Movement® to support the National Multiple Sclerosis Society with a gift of $ Name: o I wish to remain anonymousAddress: City: State: Zip: Home Phone: ( ) Work Phone: ( ) Email: I qualify for a matching gift through my employero I’m enclosing a check (made payable to NMSS)o Please charge my: o Visa o Mastercard o Amex

Account #: Exp. Date

Signature:

Please designate my tax-deductible gift for:*o Area of Greatest Needo Local Programs (San Diego, Imperial and Orange Counties)o Promise 2010 (select one of the four targeted research areas): o Nervous System Repair Initiative o Pediatric Centers of Excellence o Sonya Slifka Longitudinal Study o MS Lesion Project* If a box is not selected, your gift will be unrestricted.

Tear off this sheet and mail in envelope to: National MS Society | Attn: Karen Barton – Golden Circle | 5950 La Place Ct #200 | Carlsbad, CA 92008. For more information, visit goldencircle.MSpacific.org.

Race to Stop MS participants at the San Diego International Triathlon

MOREINFOVisit www.MSwalk.com to register, donate or volunteer!

FuNDING THE MISSION


PARTICIPATE IN WALK MSContinued from Cover

Shauna, a second grade teacher, doesn’t let herself have the thought that MS might limit her. “Because if I let myself think it will limit me, it just might,” Shauna says. “I believe in what the power of your mind can do for your health.” Despite ongoing weakness in her right side, occasionally increasing to spasticity or trembling, Shauna, now 43, is active in karate and on the move with her three dogs. “I have a niece and nephew under the age of 4, and I plan on keeping up with them forever,” Shauna boasts.

“I focus on things that will make me stronger,” Shauna

says, “and I have a lot of support in my life – they never let me think that I

can’t do something.”

Walk MS is the rallying point of the MS movement, a community coming together to raise funds and celebrate hope for the future. Join the movement this year by registering for Walk MS. Gather

your friends and family and register for Walk MS at www.MSwalk.com today! You are an important part of this Walk MS movement and when we come together, we make a bold statement: Together, we will achieve a world free of MS.

San Diego/Carlsbad 2010Saturday, April 10 University of California Irvine Check-in: 7:30 a.m.

Saturday, April 24 NTC Park at Liberty Station San Diego Check-in: 7:30 a.m.

Sunday, April 25 LEGOLAND® California Carlsbad Check-in: 7:00 a.m.

ANNuAL KAISER PERMANENTE MS DINNER AuCTION IS A HuGE SuCCESS!



On November 21, 2009, 525 guests joined us for San Diego’s largest and most prestigious black-tie charity shopping event, the 23rd Annual MS Dinner Auction. Held at the beautiful Loews Coronado Bay Resort, this year’s theme was “The Best is Yet to Come…a world free of multiple sclerosis.” Guests were inspired to raise over $425,000 while enjoying a gourmet dinner, complimentary Barefoot wine and champagne, fabulous shopping and live music and dancing with San Diego’s favorite local band, The Heroes.

Winning bidders got a jump start on their holiday shopping from over 600 live and silent packages including domestic and international travel, golf foursomes, gift cards, restaurant certificates, spa services, gift baskets, memorabilia, one-of-kind experiences and much more.

A special thank you to our title sponsor, Kaiser Permanente, as well as our other generous sponsors, Continental Airlines, Union Bank, Biogen IDEC, Nordstrom, Leo Hamel Fine Jewelers, Qualcomm, KPBS, Clear Channel, Barefoot Wine and Teva Neurosciences.

To join the excitement next year, participate in the auction committee, or learn more about sponsorship contact Angela Northrup at (760) 448-8434 or [email protected] or visit www.MSdinnerauction.com.

T@LK TO uSTHERE ARE MORE WAyS THAN EVER TO TELL US WHAT’S ON yOUR MINd

Stay connected! Not only do we want to reduce paper waste, but we also want to communicate with you in a way that YOU want! You can let us know what’s on your mind in a number of ways:

Join our email list. Simply visit • MSpacific.org and select the “Join our email list” link in the center of the page. After you register, you can select to opt-in to our Member Connection, eMSConnection and many more up-and-coming chapter programs and information.

Twitter users can follow us at • twitter.com/MSPSC.

Become our fan at • facebook.com/MSPacific.

Visit our YouTube channel at • youtube.com/MSPacific and view chapter videos.

NCB 7/39 traffic reporter Jodi Kodesh emcees the MS Dinner Auction.

PROGRAMS & SERVICES

AM I bALANCED?JULIE HOM, MPT, NCS


Balance is an important factor that enables us to do most of our daily activities including walking, standing and even sitting at the edge of a chair. Optimizing your balance means greater safety and independence with all activities and mobility.

The following behaviors may indicate that your balance is affected:

• Watching your feet while you walk

• Holding onto furniture while you walk indoors

• Holding onto someone’s arm while walking outdoors

• Avoiding activities such as curbs and stooping to pick up objects from the floor.

The good news is balance can be improved upon with specialized exercise programs. Several body systems need to be addressed including your strength, sensory systems, and balance reactions.

Optimizing your balance and therefore your safety and independence is best achieved with a physical therapist specializing in neurological and balance deficits. Furthermore, performing a home safety evaluation can minimize the risk of tripping and fall hazards. Working with the right professionals will help you live a longer, healthier and more independent life.

Julie Hom, MPT, NCS is the owner of Ability Rehabilitation Specialists, a highly specialized outpatient physical and occupational therapy clinic. Ability Rehab offers the Multiple Sclerosis Improved Performance Program which is covered by most insurance companies and a Free MS Balance Class in partnership with the Society Wellness Program. To find out more, call Ability Rehab at (858)456-2114 or log onto www.physicaltherapysandiego.com.

PHYSICAL WELLNESS CLASSESExercise builds muscle strength, cardiovascular function and an overall feeling of well-being. The Pacific South Coast Chapter offers physical wellness classes in your area that are free, fun and adapted for people with MS. Program offerings include:

• Yoga—a discipline that promotes improved balance, endurance, and flexibility while incorporating breathing techniques, relaxation and stress management.

• Aquatics—a type of exercise that utilizes the freedom and enhanced mobility created by water to increase strength, mobility and coordination.

• Balance and strength--these classes strengthen key muscular groups and optimize flexibility of joints to improve mobility and balance.

All participants must sign a waiver before their first class. For a complete listing of classes or to obtain a waiver, please call 1-800-344-4867 or visit our website, www.MSpacific.org.


AN MS PAIN CHECKLISTSPEAK uP. MS pain is real. More than half of all people with MS experience pain at some time or another. A best first step is to describe it. Make a list of when it kicks up, where it is in the body, and what it feels like. Tingling, burning, aching, stabbing, whatever. This will help a physician make a diagnosis. See next item!

GET AN ASSESSMENT. Take the list to a physician who will work with you to figure out if your pain is muscle-and-bone pain (usually from posture prob-lems), neurologic pain (from short circuiting nerves), or spastic-ity (common in people with MS). If necessary, refer your profes-sional to “Pain in Multiple Sclerosis” on www.nationalMSsociety.org. Click “For Professionals” in the gray banner at the top.

FOLLOW A REGuLAR PAIN MEDICATION SCHEDuLE. If you are prescribed a pain medication, take it according to a schedule, not after pain gets going. Many people try to tough it out, believing less medication will be better, but medications don’t work as well if taken after pain has started.

TAKE A “WHOLE PERSON” APPROACH. Regardless of the type of pain or the therapy prescribed, other things can be added to reduce pain’s impact: meditation, music, humor, hypnosis, massage, behavioral therapy, exercise, relaxation techniques,yoga. Discuss options with your provider.

CONNECT WITH OTHERS. Most people find life easier when they learn more about MS pain and reach out to others to share successful coping. Go to the yellow “Symptom Information” box on the right side of www.nationalMSsociety.org and click on “Pain” to review the resources. Also, you can always call the chapter at 1-800-344-4867.

LIVING WITH MS

MARIJuANA: THE QuESTIONS CONTINuENo discussion of MS pain in 2009 is complete without mentioning the potential of cannabis compounds for nerve pain or spasticity. A number of small-scale investigations report promising results. The National MS Society is currently funding several studies of cannabis for spasticity.

Increasingly, researchers have focused on extracts that are not smoked, as there is a wide medical consensus that marijuana smoke can be toxic to lung tissue. Because of concerns that coordination, cognition (thinking and memory) and other functions affected by MS could be worsened by cannabis, the Society convened an expert task force in 2008. They decided not to recommend medical marijuana. This decision was not based on legal barriers alone.

“Studies to date do not demonstrate a clear benefit compared to existing symptomatic therapies and … issues of side effects, systemic effects, and long-term effects are not yet clear.”

(See “Recommendations Regarding the Use of Cannabis in Multiple Sclerosis” in Expert Opinion Papers, under “For Professionals” on the Society’s Website. The Society will review this when better data become available.

MOVING TOWARD A WORLD FREE OF MS | PROgRAM HAPPENINgS


MARK YOuR CALENDARS


MOVINg FORWARd: PROgRAM FOR THE NEWLy dIAgNOSEd Saturday, February 6 Courtyard by Marriott 8651 Spectrum Center Blvd San Diego, CA 92123 Speakers: Dr. Nina Lott, Kelly Sheridan, PT, Dr. Charles Smith Topics: The diagnosis of MS, treatment options and emotional aspects of MS.

10TH ANNUAL UCSd MS SyMPOSIUM March 27 Mission Valley Marriott 8757 Rio San Diego Dr. San Diego, CA 92108 Speakers: Dr. Jody Corey-Bloom Dr. Barbara Geisser Topics: The latest information on symptom management and MS treatments, including oral medications.

MS FAMILy CRUISE 2010 June 25-28

In June of 2010 the Pacific South Coast Chapter is setting sail from Long Beach to Ensenada on Carnival Cruise Line!

Join us with your family for a three-day getaway to Ensenada aboard the Carnival Paradise. This retreat is exclusively for people with MS and their loved ones. This weekend retreat is designed to enjoy much-needed family time and to meet other families living with MS.

Along with the ship’s plentiful opportunities, the Chapter will organize social gatherings and host workshops throughout the weekend for you and your family. Get ready for an unforgettable and fun-filled weekend at sea!

Limited family scholarships are available upon request. For more information call, 1-800-344-4867 and press “1” or email [email protected].

ORANGE COuNTY

Anaheim 1st & 3rd Tuesday 12:30 - 2:30pm Rosa Ferreras 714-758-0829

Anaheim: En Español Familiares y amigos bienvenidos El segundo y cuarto martes de cada mes Anaheim Adventist Church 900 S. Sunkist St, 6 - 7:30pm Rosa Ferreras 714-758-0829 Susana Pérez 714-235-7570

Brea: Family & Friends Welcome 2nd Monday & 4th Friday, 10am - 12pm Kathy Kelby 714-525-0686 Rob Lammers 714-990-2933

Brea As of January 2010 Last Thursday of the month, 10am - 12pm Denise Kish 949-951-1402 or 909-519-4410 Jim Langdon 714-392-0002

Costa Mesa: Man to Man 2nd & 4th Wednesday 1:30 - 3pm Frank Austin 714-925-4100 Mike Milne 949-215-8502

Huntington Beach: Minimal Symptoms / Newly Diagnosed 2nd Wednesday, 10am - 12pm Jeanne Archibald 714-842-7198 Priscilla Wolz 714-846-6526

Huntington Beach: Working with MS 1st Tuesday, 6:30 - 8:30pm Karen Patterson 714-377-4006 Laurie Cable 714-969-8298

Irvine: Mature Group 2nd & 4th Wednesday 10am - 12pm Betty Brusco 949-481-0143 Jack Santos 949-786-9593

Irvine: Girl Talk 3rd Monday, 11am - 1:30pm Tabitha Evans 714-669-5618

Laguna Hills 1st Tuesday, 10am - 12pm Francince Grasso 949-278-6935 Karen Harlas 949-498-9583

Lake Forest: MS with Christ 3rd Monday, 6:30 - 8:30pm Bill Bisch 949-218-5020 Cathy Varela 949-496-3810

Midway City 1st & 3rd Tuesdays 10am - 12pm Pat Howard 714-968-0277 Linda Logan 714-374-0430

Mission Viejo: Early-Retired with MS 1st Wednesday 11am - 1:30pm Jude Kosins 949-498-4530 Celine Miller 949-361-0878

Mission Viejo: Minimal Symptoms / Newly Diagnosed 2nd Wednesday, 6:30 - 8pm Jerry Dowd 949-498-5955 Susan Watson 949-493-1299

Newport Beach 3rd Sunday, 2 - 4pm Reverend Sellers 949-764-8358 Norma Mucia 714-641-9171

Newport Beach: Minimal Symptoms / Newly Diagnosed 2nd Tuesday, 11am - 1pm Debra Haynes 949-650-7659 Sherri Brash 714-846-2064

Orange Last Thursday 10:30am - 12:30pm Greg Hertzler 714-993-5988

SELF-HELP GROuPS

MOREINFOIf you would like more information about support groups in your area, call 1-800-344-4867 press ‘1’ or contact a leader listed above.


SELF-HELP GROuPS

SAN DIEGO COuNTY

Cardiff by the Sea: Women’s Group Future meetings put on hold For more information, please contact Jessica Goodrich 714-689-9602

Carlsbad: Christian Group 3rd Friday, 1-3 pm Dawn Vallely 760-390-1777

Chula Vista: En Español Llame para más información. Fernando Palomino 619-691-7964

Chula Vista St. Marks Lutheran Church 850 Hilltop Dr. 3rd Wednesday, 11am - 1pm Susan Lipp 619-248-0669 Bonnie Kuhn 619-749-8806

Escondido Joslyn Senior Center, Room 5 210 Park Avenue 3rd Wednesday, 1 - 3pm Beth Bradsher 760-747-9096 Michele Easterling 760-805-6390

Oceanside Oceanside Library 3861 Mission Avenue 2nd Wednesday, 12 - 2pm Juanita Hamilton 760-754-1911

Poway Weingart Center 13094 Civic Centre Drive 1st Tuesday, 6:30pm Peggy Green 858-748-4009

Ramona 2nd Tuesday, 11am - 12pm Van Reeder 760-789-9129

San Diego (Clairemont/ La Jolla) Denny’s Restaurant 4280 Clairemont Mesa Blvd. 1st Thursday, 10am - 12pm Denise Kish 949-951-1402 or 909-519-4410

San Diego: Mens Group Kaiser Education Center San Diego 10990 San Diego Mission Road 1st Tuesday, 6:30pm Bill Homer 858-571-1867

San Diego (Mid-City) Kaiser Education Center San Diego 10990 San Diego Mission Rd 4th Monday, 2 - 4pm Stephanie Russell 619-224-6156

Spring Valley New Seasons Church 2300 Bancroft Drive 2nd Saturday, 12:30 - 2pm Kris Hodge 619-933-2601 Debbie Centeno 619-460-4123

TOLL FREE NUMbER 1 800 344 4867 | 11

AQuATICS

Chula Vista: Outdoor Loma Verde Pool: 1420 Loma Lane Tuesdays & Thursdays 12 - 1pm

El Cajon: Outdoor St. Madeline Sophie’s Center 2119 East Madison Avenue Mondays, Wednesdays & Fridays 11:30am - 12:30pm

Fullerton: Indoor North Orange County YMCA 2000 Youth Way Mondays, Wednesdays & Fridays 9 - 10am $6 per session

Irvine: Outdoor Waterworks Aquatics 25 Waterworks Way Saturdays, 9 - 10am

San Diego: Outdoor Peninsula Family YMCA 4390 Valeta Street Monday-Friday, 11am - 12pm $5 per session

San Clemente: Outdoor Ole Hanson Public Pool 105 West Avenida Pico Tuesdays & Thursdays, 10:30 - 11:15am $5 per session Amanda 760-448-8404

San Diego: Indoor Wave House Athletic Club 3115 Ocean Front Walk Mondays, Wednesdays & Fridays 11am - 12pm

Vista: Indoor Bally’s Fitness Center 1932 Hacienda Drive Tuesdays & Thursdays 11:45am - 12:45pm

YOGA

Costa Mesa Yoga Works 1835 Newport Blvd, #A208 Mondays, 10:45-11:45am

Dana Point Dana Point Community Center 34052 Del Obispo Road Wednesdays, 8 - 9:15am

Fullerton St. Stephen’s Lutheran Church 2311 E. Chapman Avenue Wednesdays, 10:30 - 11:30am

Huntington Beach Yoga Works 301 Main Street Wednesdays, 1 - 2pm

La Jolla Scripps Memorial Hospital 9888 Genesee Avenue Thursdays, 9 - 10am $10 monthly fee Cardiac Rehab 858-626-6493

Santa Ana Goodwill Fitness Center 1601 E. St. Andrew Place Fridays, 9:45-10:45am

San Diego Addie’s Personal Training Studio 4440 Ingraham St. Sundays, 10-11am $5 per session

San Marcos - Lebed Method Meadow Lark Community Church 1918 Redwing St. Diana Dean-Naú 760-809-9176 $5 per class

OTHER

La Jolla Ability Rehab Specialists 737 Pearl St, #108 1st, 2nd, 3rd Tuesdays, 6-6:45pm

Mission Viejo Balance Rehabilitation 25971 Pala, Suite 110 Tuesdays, 1 - 2pm

Costa Mesa Healthy Balance 1599 Superior Avenue, Suite B Thursdays, 10:45 - 11:45am

San Diego: MS F.I.T.T Addie’s Personal Training Studio 4440 Ingraham St. Saturdays, 11:30am - 12pm $5 per session

bALANCE

STRENGTH TRAINING


TOLL FREE NUMbER 1 800 344 4867 | 13

ACTIVISM

NEW bILL SEEKS TO REDuCE OuT-OF-POCKET DRuG COSTSPeople with MS could save more than $6,000 on disease-modifying therapies. In August, national health care reform took a step forward when Senator John D. Rockefeller IV (WV) introduced the Affordable Access to Prescription Medications Act of 2009 (S. 1630). A similar bill was introduced to the House in October. Like the bill in the Senate, the House bill would create a monthly $200 per medication cap on all out-of-pocket prescription drug costs, and a monthly $500 per person cap for those taking more than one medication.

According to a 2006 survey, 20% of people with MS polled either did not fill a prescription, skipped medication doses, or split pills. Many of them are insured. But a growing number of insurers are moving expensive medications onto specialty tiers, pricing the treatments out of reach. “People with health insurance typically pay a fixed amount for drugs on the first three tiers of a formulary,” explained Kimberly Calder, MPS, director of Insurance Initiatives at the Society. “But when an insurance company moves a drug to the fourth, or ‘specialty,’ tier, the insured becomes responsible for a percentage of the drug’s cost, anywhere from 20-35% or more.”

For drugs like the MS disease-modifying treatments that means thousands of dollars. “The National MS Society is grateful to Senator Rockefeller for his leadership in supporting caps on monthly out-of-pocket costs,” said Joyce Nelson, the Society’s president and CEO. “This bill would provide peace of mind for thousands of Americans by helping to ensure access for people living with chronic disease like MS.”

MOREINFOFor more information about

the Affordable Access to

Prescription Medications

Act and to help advocate for

public policies that benefit the

lives of people living with MS,

visit nationalMSsociety.org/

advocacy.



VOLuNTEERS MAKE IT HAPPEN!SUCCESS IN LIFE HAS NOTHINg TO dO WITH WHAT yOU gAIN IN LIFE OR ACCOMPLISH FOR yOURSELF. IT’S WHAT yOU dO FOR OTHERS. -- dANNy THOMAS

Check out the chapter’s upcoming volunteer opporuntities:

WALK MS VOLuNTEER Join the fun at Walk MS in April. Many groups and individual volunteers are needed. For more information, to see available positions, or to register, visit www.MSwalk.com.

OFFICE VOLuNTEERS NEEDED You have probably witnessed thousands of volunteers at our special events and chapter programs throughout the year, but did you know that we are always in need of volunteers to help us with the day to day operations of the Chapter? Office volunteers at the Pacific South Coast Chapter provide critical support in our various departments. If you have four or five hours once a week, Monday – Friday during business hours and would like to volunteer at the chapter, please contact Linda Ingram at 760-448-8416 or [email protected].

INTERN NEEDED The Volunteer Department is looking for a college student intern at the Carlsbad office. This is a non-paying position but you will be learning to recruit and manage volunteers for our large events. For more information contact Linda Ingram at 760-448-8416 or [email protected].

THANK YOu TO OuR STAR VOLuNTEERS!The following volunteers were recently recognized at our Annual Meeting on January 23. We are grateful for their support of our mission to create a world free of MS.

Chapter Star Volunteer of the Year Arnold Spearman (pictured above)

Challenge Walk MS Volunteer of the Year Lizbeth Najm

bike MS Volunteer of the Year Rick Browning

MS Dinner Auction Volunteer of the Year Katherine Mathews

MS General Office Volunteer of the Year Julie Durkin

Activist Volunteer of the Year Diana Hardy

Self Help Group Leader of the Year Rosa Ferreras

Research Volunteer of the Year Zuzana Hostomska

Angel Visitation Volunteer of the Year Jennifer Sweet

TOLL FREE NUMbER 1 800 344 4867 | 15

FuNDING THE MISSION

ACCEPT THE CHALLENGE OF A LIFETIMEIf you want to make significant strides toward creating a world free of multiple sclerosis, considering being a part of Challenge Walk MS. This three-day, fifty-mile walk is an experience that will impact your life forever. Read about one woman’s experience with Challenge Walk MS below.

Hello!

I would like to tell you about someone very special to me: my Mom. She lives with multiple sclerosis. My mom was with me every step of the way growing up and now I am taking steps for her. This is why I registered for Challenge Walk MS.

I cannot express the feelings I had as I finished the Challenge. There were hundreds of people I had gotten to know over the weekend and we all walked the last mile as one, united in our goal to stop MS.

As we came through the arch, I saw my Mom. I felt so accomplished. The tears wouldn’t stop. I had finished.

I collapsed into my mom’s arms. There was so much pride, so much love, so much passing between us with no words. That hug is the reason why I did all of this. And that hug is the reason why I am doing it again.

–Jillian

bIKE MS RAISES $2.3 MILLION!The Bike MS Bay to Bay Tour sponsored by Land Rover Miramar celebrated its 27th year October 10-11, 2009. Approximately 2,500 cyclists helped raise over $2.3 million towards a world free of MS, as they rode down the picturesque coastlines of Orange and San Diego counties. With the largest participation in the history of the event, our sponsors, volunteers and vendors helped make this a safe and fun weekend for all.

Thank you to our dedicated and generous sponsors: Land Rover Miramar, Continental Airlines, KTLA, Qualcomm, BJ’s Restaurant and Brewhouse, Wahoo’s Fish Taco, Frazee Paint, and ACE Relocation Services.

Registration for the 2010 Bike MS Bay to Bay Tour, taking place October 16 & 17, 2010 opens in early February. Visit www.biketofinishMS.com for more information.

MOREINFOChallenge Walk MS September 24-26 Carlsbad to San Diego

For more information or to register, visit myMSchallenge.com or call 1-800-486-6762.

Jillian and her mom embrace at the 2009 Challenge Walk


RESEARCH

2009 REVIEW: SubSTANTIAL PROGRESS PROPELLED MS RESEARCH FORWARDThis year saw exciting research progress, with unprecedented opportunities on the horizon and more scientists than ever working on important questions. While the economic environment resulted in an unfortunate slowing of funding, creating gaps in planned expenditures to support MS research, we hope this impact will be of short duration.

Despite these challenges, the National MS Society continues to propel research forward and move us closer to a world free of MS.

In 2009 the Society provided over $33.5 million to support 345 new and ongoing projects in our research portfolio, plus $1.5 million for Fast Forward, our drug development subsidiary which continues to attract new funding streams. In addition, thanks to the efforts of our MS activists, $5 million has been specifically set aside for funding MS research out of the 2009 Department of Defense budget.

The Society has nimbly pursued promising opportunities when they arise, such as the recent request for research applications to expeditiously examine the potential impact of the chronic cerebrospinal venous insufficiency (CCSVI) hypothesis on disease process in MS.

Here is just a small sample of the many important, potentially high-impact research results that occurred this year, which support

our three research goals: stopping MS, reversing the damage and restoring function, and ending MS forever.

STOPPING MS • Several papers published this year provided more evidence that starting on MS therapies early after disease onset, or even before a definite diagnosis, can pay off later by delaying disease progression. In addition, results of clinical trials of oral therapies and therapies with infrequent dosing regimens were presented at medical meetings and in journal articles this year. So far, some appear to have benefit against MS attacks, and safety profiles look acceptable.

• Novartis International AG announced that oral FTY720 (fingolimod) significantly reduced relapse rates and slowed disability progression over two years in a large-scale, phase 3 trial in relapsing-remitting MS. According to the company, safety data confirmed a positive benefit-risk profile, and the company plans to seek marketing approval at the end of calendar year 2009. (http://www.nationalmssociety.org/research/research-news/ news-detail/index.aspx?nid=2154)

• An oral drug was submitted to the FDA for marketing approval in September 2009. In a large-scale clinical trial, cladribine tablets significantly reduced relapse rates and other disease activity in people with relapsing-remitting MS. If

the FDA application is successful, it would be the first approved oral disease-modifying therapy for MS. (http://www.nationalmssociety.org/research/research-news/ news-detail/index.aspx?nid=2162)

• Positive results were announced by sponsors of a clinical trial of the experimental IV monoclonal antibody ocrelizumab, which significantly reduced disease activity on MRI scans in a study of 220 people with relapsing-remitting MS. Since this was a phase 2 study, additional research will be needed to further determine this drug’s safety and benefits. (http://www.nationalmssociety.org/research/research-news/ news-detail/index.aspx?nid=2447)

• An international task force convened by the Society published a landmark paper in the journal Multiple Sclerosis to guide neurologists through the complex process of distinguishing MS from look-alike disorders (“differential diagnosis”). This paper was the most frequently downloaded paper from the journal’s Website this year.

• Fast Forward made its first investments in promising agents. This effort to speed the delivery of new treatments to people with MS has already attracted over $20 million in new funding. (http://www.nationalmssociety.org/fast-forward/fast-forward-news/index.aspx)

• A small NIH-supported study by Stanford University researchers

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found that women who breastfed their babies exclusively (without giving supplemental bottles) for at least the first two months post-partum were less likely to have an MS relapse than those who did not breastfeed or who did not breastfeed exclusively during the first two months. (http://www.nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=1587)

• Multiple previous studies have documented that smoking cigarettes increases the risk of developing MS. Harvard researchers have now tracked hundreds of smokers, ex-smokers and never-smokers, all of whom had MS, for an average of over three years. They reported that disability progressed more quickly in smokers. (http://www.na-tionalMSsociety.org/research/research-news/news-detail/index.aspx?nid=1801) And in several measures, ex-smokers did not differ substantially from never-smokers, suggesting that quitting may delay MS progression. In two other separate studies, State University of New York, Buffalo researchers reported links between smoking and brain tissue damage observed on MRI scans of people with MS, and Karolinska Institute investigators in Sweden confirmed negative effects of smoking, but found no association between the use of Swedish snuff and the risk of developing MS. This latter study suggests that a component of cigarettes other than nicotine is

responsible for the increased risk of developing MS. (http://www.nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=2002)

• Early, small-scale trials are underway or getting started to test the potential of a special type of adult stem cell found in the bone marrow, called mesenchymal stem cells. Although these cells have the potential for both turning down MS immune attacks and stimulating nervous system repair, it’s still too early to know whether this approach will prove safe and beneficial.

• To help ensure that stem cell trials are conducted in a scientifically sound way that will move the field forward, the Society convened an international meeting with our counterparts in the U.K., Italy, and France to develop guidelines for stem cell trials, which are expected to be published in 2010.

• An international team funded in part by the National MS Society reversed MS in mice by administering lisinopril, a drug commonly used to lower blood pressure. (http://www.na-tionalmssociety.org/research/research-news/news-detail/index.aspx?nid=1941) A drug used to treat diabetes (metformin) also improved MS-like disease in mice in a study by Society-funded researchers from Medical University of South Carolina and Mayo Clinic.(http://www.

nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=2001) And researchers from Canada reported that mice recovered from MS-like disease when administered a compound (called “GIFT15”)formed by fusing two immune proteins. (http://www.nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=1925)

• A European collective of imaging experts known as “MAGNIMS” published new information on imaging and clinical findings that might help explain why some people experience a mild course of MS, also known as “benign” MS. They recommended that cognitive functions, not just physical functions, be taken into account when labeling a person’s MS as benign. (http://www.nationalmsso-ciety.org/research/research-news/news-detail/index.aspx?nid=1746)

• The first large-scale clinical (“phase II”) trial of the sex hormone estriol in MS, funded by the National MS Society and especially its Southern California chapter, along with the NIH, continued to recruit women with MS to participate, expanding the number of centers to 16 across the US. The two-year trial could lay the groundwork for a larger, definitive trial that could lead to a new treatment option for women with MS. (http://www.clinicaltrials.gov/ct2/show/NCT00451204?term=estriol+AND+MS&rank=1)

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REVERSING MS DAMAGE/ RESTORING FuNCTION

• In response to reports that a phenomenon called CCSVI (chronic cerebrospinal venous insufficiency, a dysfunction of brain blood flow and/or blood drainage) may contribute to nervous system damage in MS, the Society invited investigators to apply for grant funding and created an accelerated review process to explore this lead. If confirmed, this may open up new research avenues into the underlying pathology of MS and new approaches to therapy. (http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=2206)

• The Society gathered together 70 members of the 4 international Promise: 2010 Nervous System Repair Teams (http://www. nationalmssociety.org/research/ research-we-fund/targeted-research/nervous-system-repair/index.aspx)to share progress and plan next steps to speed clinical trials of therapies to protect and reverse neurological damage. Each team reported impressive progress, with two of the teams about to launch new, small-scale clinical trials of different types of stem cells, with separate funding. (http://www.nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=758)

• Members of the Society’s Nervous System Repair Team led by Professor Charles French-Constant (University of Edinburgh and University of Cambridge, UK)

(http://www.nationalmssociety.org/research/research-we-fund/targeted-research/nervous-system-repair/ffrench-constant-repair-team/index.aspx) published a paper demonstrating that a complex network of proteins that interact during brain development (called the “Wnt signaling pathway”) may also play an important role in the failure of nerve-protecting myelin to repair itself in people with MS. This could provide new clues to reversing myelin damage. (http://www.nationalmssociety.org/re-search/research-news/news-detail/index.aspx?nid=1780)

• After showing benefits for temporarily improving walking speed in all types of MS in two phase 3 clinical trials, an advisory committee for the FDA recommended marketing approval for Acorda Therapeutics’ fampridine (with the proposed new name, Amaya). If approved, this oral drug would be the first approved specifically for managing MS symptoms. The National MS Society funded early stage studies in the development of this drug. (http://www.nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=951)

• Two groups funded by the Society reported findings on nerve tissue injury and repair that add important information needed to stop MS progression and develop nervous system repair strategies. Mayo researchers found two enzymes that may serve as markers of progressive MS and nerve fiber

injury, and investigators at Mount Sinai School of Medicine (New York) reported that a different enzyme is essential for replenishing myelin-making cells that have been depleted by MS. (http://www.nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=410)

• An oral drug designed to treat uncontrollable laughing and/or crying (also called pseudobulbar affect), a troubling symptom experienced by some people with MS and other neurological disorders, passed another hurdle by showing positive results in a Phase III trial. According to company sources, Zenvia™ (Avanir Phar-maceuticals) significantly reduced the rate of laughing and crying episodes and appeared to be safe and well tolerated. (http://www.nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=1926)

2009 RESEARCH REVIEW (CONTINuED)

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ENDING MS FOREVER

• The Society launched a genetics study that should identify most of the common genes that contribute to making people susceptible to developing MS. In the short run this should set us up to discover new disease pathways that can be targeted for therapy. In the longer run, this should provide a map for preventing MS.

• Researchers at the University of Buffalo, New York and Italy reported two studies that add to growing findings linking the Epstein-Barr virus (EBV) with multiple sclerosis. One study suggested a link between EBV exposure and the loss of nerve tissue, while the other explored interactions between a person’s genes and EBV. (http://www.nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=999)

• Two studies published in the journal Nature Genetics identified new genes and gene regions that contribute to making people susceptible to developing MS. The findings, by the International Multiple Sclerosis Genetics Consortium and the Australia/New Zealand MS Genetics Consortium, add to a growing list of gene variations linked to MS susceptibility. The National MS Society funded the formation of the International MS Genetics Consortium and studies by the Consortium. (http://www.nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=1645)

• For the first time, researchers in the UK and Canada found evidence of a direct interaction between vitamin D and a common genetic variant, the presence of which increases the risk of developing MS. The research highlights the importance of studying the interaction of genes and the environment to search for the underlying triggers of this complex disease. (http://www.nationalmsso-ciety.org/research/research-news/news-detail/index.aspx?nid=774)

• The Society convened an international workshop focused on strategies to find the cause of MS, as well as factors that drive progression and ways to estimate MS frequency. One outcome from the workshop is the proposed funding of a two-year pilot project to plan a large study to determine risk factors that drive MS

2009 RESEARCH REVIEW (CONTINuED)progression and predict prognosis. (http://www.nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=991)

• The Society also held the first-ever Don Tykeson Fellows Conference to stimulate new research ideas and strengthen the commitment of these bright young people to MS research. Supporting fellows, who are the future of MS research, is a key component of our strategic plan. (http://www.nationalmsso-ciety.org/research/research-news/news-detail/index.aspx?nid=539)

These and other leaps forward – accomplished in the midst of the worst economic downturn since the Great Depression – made 2009 a momentous year of progress toward a world free of MS.

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FEbRuARY6 Moving Forward: Program for the Newly diagnosed MARCH27 10th Annual UCSd MS Symposium APRIL 10 Walk MS - Irvine24 Walk MS - San diego25 Walk MS - Carlsbad www.MSwalk.com

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