Winter 2011 - MSConnection

MOVING TOWARD A WORLD FREE OF MS | 2011 • WINTER • VOL 1

INSIDE THIS ISSUE

PACIFIC SOUTH COAST CHAPTER

Join the Lawry Circle PAgE 4

Service Provider Spotlight PAgE 6

Volunteers of the Year PAgE 14

MS Research Year in Review PAgE 16-19

Train for the endurance event of a lifetime and help create a world free of MS

PAGE 4

INSIDELOOK

When 32-year-old Frank Austin’s 20/20 vision deteriorated suddenly, doctors could not pinpoint a reason. “I went on with life, but as time passed, I began to notice other issues. Like when I wrote, my pencil would jump slightly out of control,” remembers Frank. When friends began to notice a limp in his gait, Frank, then 48, consulted a neurologist. “As the neurologist pointed out the lesions on my brain shown by the MRI, I was in shock. What I knew about multiple sclerosis (MS) was limited. I didn’t know what to expect.”

Frank has actively engaged with the chapter since his diagnosis, as a member of the Government Relations Committee, an Angel Visitor, a Champion for Bike MS and Walk MS fundraisers, and a leader of a self-help group. Since 1999, Frank has led a Walk MS team of people affected by MS. Shares Frank, “It is my belief that those of us living with this disease should be active in the

ChApTER MEMbER, FRANk AuSTIN, uRGES pEOpLE LIVING WITh MS TO pARTICIpATE IN WALk MS

movement to end the disease. We can and must put a face on what MS is and how it impacts people’s lives.” He continues, “There are enough people willing to sit on the sidelines and watch others do the work. Some of us have to get in the fight! And it is a fight! A fight to organize, educate, fund, advocate, motivate and support the research and programs needed by our community to continue improving the lives of those affected by MS.” (continued on page 5)

Frank (left) and teammate, Mike

2 | JOIN THE MOVEMENT: nationalMSsociety.org

SAVE ThE DATE

(800) 344-4867

PUbLICATION OF THE NATIONAL MULTIPLE SCLEROSIS SOCIETY Pacific South Coast Chapter

Chapter Offices: 12121 Scripps Summit Drive, Suite 190 San Diego, CA 92131

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

Vice president, programs & Services Karen Hooper

MSConnection Editor Jessica Read

The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered 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 recommendations 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.

© 2011 National Multiple Sclerosis Society, Pacific South Coast Chapter

PACIFIC SOUTH COAST CHAPTER

GOLFERS TEE up FOR ThE MS GOLF INVITATIONAL IN MAy

Join Honorary Chair, Coach Norv Turner and the San Diego Chargers by taking a swing at MS on Monday, May 2. In its 17th year, the MS Golf Invitational is held at the prestigious La Jolla

Country Club. The event hosts a maximum of 120 players and always sells out early – so reserve your invitation now!

Player slots are available on a first-come, first-serve basis. Foursomes are $3,000. Entry includes green fees, cart, lunch, special tee gifts and prizes, an “after golf” reception, gourmet awards dinner and a live auction. Packages to play with a San Diego Chargers player start at $5,000. Some of last year’s players included Philip Rivers, Quentin Jammer, Eric Weddle, and Mike Tolbert.

For more information or sponsorship opportunities, contact Angela Northrup at [email protected] or visit golfMS.org.

Coach Norv Turner (left) and Jimmy Raye, Director of Player Personnel for the San Diego Chargers

SEVENTEENTH ANNUAL

TOLL FREE NUMbER 1 800 344 4867 | 3

RESEARCh

IN OCTOBER, MORE THAN

5,500 NEuROLOGISTS AND

OTHER INVESTIGATORS

FROM AROuND THE WORLD

COVERED ALMOST EVERy

ASPECT OF CuRRENT MS

RESEARCH IN SOME 900

SCIENTIFIC PRESENTATIONS

AND POSTERS AT THE

ANNuAL ECTRIMS

(EuROPEAN COMMITTEE

FOR TREATMENT AND

RESEARCH IN MuLTIPLE

SCLEROSIS) CONFERENCE IN

GOTHENBERG, SWEDEN.

RESEARCh hIGhLIGhTSA newly completed two-year, phase III trial of teriflunomide, an oral compound that inhibits specific immune cells, in 1,088 people with relapsing MS, found positive results. Dr. Paul O’Connor of the university of Toronto reported that two different doses of teriflunomide significantly reduced the rate of MS relapses by up to 31.5% compared to placebo, and that the higher dose reduced the risk of disability progression by 29.8%. It also reduced the risk of new MS lesions and reduced disease activity. Additional clinical trials are under way.

Other medications also show promise at various trial stages. An oral compound called firategrast caused a significant decrease in the rate of new MRI-detected lesions in a six-month trial in relapsing-remitting MS. Ocrelizumab, which targets and kills immune B cells, reduced new lesions by at least 89% over placebo in a 24-week trial.

In a separate session, Dr. Antonio uccelli of the university of Genoa described attempts to stop MS progression using infusions of an individual’s own bone marrow or blood stem cells (mesenchymal cells). Dr. uccelli is now collaborating on a study that he hopes will show that these cells are beneficial.

RESTORING FUNCTION Several research teams reported progress in improving quality of life and specific symptoms, including fatigue and mobility issues, through group physical therapy, and supervised aerobics, yoga and resistance training classes. Another study suggested that memory training can improve brain function. Many reports focused on CCSVI (chronic cerebrospinal venous insufficiency), with mixed or conflicting results. Lab studies identified additional molecules that may block the ability of myelin-making cells to repair damage caused by MS; selectively turning them off could be useful for encouraging myelin repair in people with MS.

RISK FACTORS Dr. Trond Riise of the university of Bergen reviewed the growing list of factors that may contribute to an individual’s susceptibility to developing MS, and pointed to current studies that may lead to a better understanding of the interactions and variations of these multiple risk factors. For a more complete report on the conference, search “ECTRIMS” at nationalmssociety.org.

ThE WORLD OF MS RESEARCh

Read about an exciting

year in review on multiple

sclerosis research progress

from 2010.

PAGES 16-19

LEARNMORE


FuNDING ThE MISSION

STEp IT up WITh ThE RACE TO STOp MS ENDuRANCE TRAINING pROGRAM

ThE LAWRy CIRCLE’S QuEST FOR A WORLD FREE OF MS

For active men and women who seek to do more than just participate in athletic events, the Race to Stop MS Endurance Training Program is an energetic, professionally staffed alternative, that offers participants reliable training by licensed professionals who will guide them through the rewarding process of accomplishing physical endurance events. There are several participation options available.To learn more or register to participate, visit racetostopMS.com or call Nicole Pearson at 760-448-8422.

When Sylvia Lawry founded the National Multiple Sclerosis Society in 1946, she was hoping to find a cure for MS for her brother, Bernard. While the cure eluded them both, Lawry’s legacy is a national movement that aggressively funds research, advocates for change, and provides programs and services that help all Americans affected by MS move their lives forward.

The Lawry Circle is composed of people who know that the quest for a world free of MS must continue. It honors donors who give through their will, trust or estate plan and recognizes this deep commitment to improving the lives of those with MS.

Deferred gifts include bequest intentions in a will; charitable gift annuities; charitable trusts ; the designation of the Society as beneficiary of a retirement account or life insurance policy; or the donation of a life insurance policy.

These deferred gifts are the ultimate expression of confidence in the National MS Society. Because all deferred gifts represent an expression of lifetime commitment to the Society, there are no minimum gift levels and membership is for life.

Please call to discuss your opportunity to leave a gift to the Society by contacting Karen Barton at (760) 448-8412 or [email protected].

If you currently name the

National MS Society in your

estate plan, please contact us

so that we can recognize your

dedication and inspire others

to help. Should you choose

to remain anonymous,

your gift will be kept

completely confidential.

CONTACTuS

Race to Stop MS participants at the San Diego International Triathlon


FuNDING ThE MISSION

(continued from cover) The Walk gathers over 12,000 people annually across three sites. Frank has a hard time deciding his favorite part of the event, which offers live music and entertainment, as well as refreshments. To Frank it’s about the whole experience: “Thousands of strangers from different backgrounds, different ages -- and everyone present is tuned in to all things MS. We are all moving in one direction.”

Frank often uses a cane, occasionally uses a walker and frequently relies on a wheelchair when traveling or to delay fatigue. Frank no longer drives because his right leg is “just along for the ride” and he cannot move his foot from the accelerator to the brake. “I accept the lifestyle changes that come with MS. I accept the fact that tomorrow may be different, that I might not be able to perform as well physically as I did yesterday; that I might need a little help along the way.”

Frank urges other people to join the Walk, regardless of mobility. He declares, “life with MS is marred by ever-progressing sacrifice. Professional career, driving, walking/running, quality of life, freedom to go and do spontaneously are a few of the

STRENGTh IN NuMbERS

Thousands of walkers join together at Walk MS

ones that come to mind. But like all other efforts; there is strength in numbers! As far as MS is concerned the National MS Society’s Pacific South Coast Chapter offers the greatest in

strength and numbers in the local area. So I chose to align myself with their effort in any way I can. It may be a small contribution to the effort, but it’s the best I can offer!”

JOIN ThE MOVEMENT® & REGISTER TODAy!

MSwalk.com

April 9 university of California Irvine

April 30 NTC Park at Liberty Station San Diego

May 1 LEGOLAND® California Carlsbad


pROGRAMS & SERVICES

For many people living with MS, sometimes the most challenging aspect 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.

The program has been designed for already-diagnosed individuals whose condition may have changed since their initial diagnosis. Reevaluations can help provide new recommendations to help clients manage their condition more effectively.

At the appointment, clients receive a customized evaluation based on their individual needs. Areas assessed include functional mobility, education, work simplification, energy conservation, cognitive and linguistic evaluations, and more.

A comprehensive 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’

SERVICE pROVIDER hIGhLIGhT ThE REhAbILITATION CENTER AT SCRIppS ENCINITAS MuLTIpLE SCLEROSIS (MS) OuTpATIENT pROGRAM

Scripps Encinitas provides first-class care and customer service to individuals living with multiple sclerosis

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. In addition, we are home to the first CARF-accredited brain injury program in the San Diego, Imperial and Riverside counties and the first Joint Commission-certified Primary Stroke Center and CARF-accredited stroke rehabilitation program.

For more information or to schedule an evaluation with the MS Outpatient Program, 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.



FuNDING ThE MISSION

On November 20, 2010, over 600 guests attended San Diego’s largest and most prestigious black-tie charity shopping event, the 24th Annual MS Dinner Auction sponsored by Azamara Club Cruises. Held at the beautiful Loews Coronado Bay Resort, this year’s Venetian-themed event inspired guests to raise over $450,000 toward a world free of MS while enjoying a gourmet Italian dinner, fabulous shopping, and live entertainment and dancing.

Winning bidders got a jump start on their holiday shopping from over 700 live and silent packages including domestic and international travel, golf foursomes, gift cards, restaurant certificates,

“pOSTCARDS FROM VENICE” IS A huGE SuCCESS!

CONNECT WITh uS ONLINEBe a part of our online community and get instant access to important information from the Society as well as up-to-date MS research progress and more!

spa services, gift baskets, memorabilia, one-of-kind

experiences and much more.

A special thank you to our title sponsor, Azamara Club Cruises, as well as Continental Airlines, Kaiser Permanente, Torrey Pines Bank, Biogen IDEC, Pfizer,

Leo Hamel Fine Jewelers, union Bank, Qualcomm, KPBS, Clear Channel, Barefoot Wine, and Redfearn & Associates.

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

Like our page at facebook.com/MSpacific

Follow us on twitter.com/MSpSC

Share your videos or photos with us at share.MSpacific.org

Chapter president, Rich Israel (left) with Board of Trustees member Barbara Maurais and her husband Roger.

Join our eNewsletter list. Email us at [email protected] with the subject “Add Me To eNews!” please include your first and last name.


MOVING TOWARD A WORLD FREE OF MS | PROgRAM HAPPENINgS

To register for any of the programs listed, as well as learn about additional programs available, visit calendar.MSpacific.org or call us at 1-800 344-4867 (1-800-FIGHT-MS) and press “1.”

REGISTERTODAy

Get Out of Town! The Ins and Outs of Accessible Travel Wednesday, February 2 6:30 – 7:30pm If you are avoiding travel because you don’t think you can get around, think again! Learn about how to plan your trip, deal with airports and navigate new places; even if you use a wheelchair or scooter.

Turning humor into Medication Thursday, February 17 6:30 – 7:30pm Studies have shown that humor and laughter strengthen your immune system, boost your energy, diminish pain, and protect you from the damaging effects of stress. Take a tour of your life and learn how to laugh at yourself and to create humor out of the not so funny experiences of life.

Energy Management: MS & Fatigue Tuesday, March 8 6:00 – 7:00pm Fatigue is one of the most common symptoms of MS, occurring in about 80% of people. It can interfere with your ability to function at home and at work. yes, fatigue is a difficult symptom to treat, but you CAN manage your fatigue.

National MS Society Research & Funding Decisions Tuesday, March 22 6:00 – 7:15pm Research in MS is progressing at a remarkable rate, with more potential therapies in the pipeline than at any other time in history. The National MS Society is a driving force of MS research. Learn how far we’ve come, where we’re going, and what the Society is doing to move toward a world free of MS.

Social Security Disability Insurance Information Seminar Costa Mesa Thursday, February 24 8:30am – 12:00pm Social Security Disability Insurance (SSDI) information seminar is an educational seminar that will help individuals with MS apply for SSDI or appeal a denial. Also, it will provide tools and tips on how to manage your finances.

Moving Forward: The Newly Diagnosed Seminar San Diego Saturday, February 26 Moving Forward is an educational seminar for people who are newly diagnosed with multiple sclerosis within the past 3 years. Our objective is to provide you with information about the diagnosis of MS, treatment options, and the emotional aspects of MS. Together, we hope to provide the knowledge necessary to help you in dealing with your diagnosis. This is your chance to have your questions answered, learn the latest, and meet others with MS.

REGIONAL TELECONFERENCE SERIES 2011

MARkyOuRCALENDARS


MARk yOuR CALENDARS

Annual uCSD MS Symposium Saturday, March 26 Mission Valley Marriott 9:00am-12:00pm

Learn the latest on MS treatments and information from Dr. Corey-Bloom and other MS professionals. Registration will be available online or by phone in late February.

SAVETHEDATE

boys’ Night Out San Clemente Thursday, March 10 6:00 – 9:00pm An exciting new program for men living with MS, Boys’ Night Out provides guys-only social events to discuss life with MS. New outings are planned three times a year. Our 2nd Boys’ Night Out dinner at Sheraton Carlsbad Resort in December was a huge hit! Please join us in March.

Members enjoy adaptive sailing at the Mission Bay Aquatic Center during the Annual Family Day at the Bay

Annual Family Day at the bay

Saturday, May 14 Mission Bay Aquatic Center 11:00am-3:00pm

Experience a day of fun in the sun at the 10th Annual Day at the Bay. Join other families and friends affected by MS to enjoy adaptive sailing, games, and a picnic lunch. Further details will be included in the invitation to be mailed in April.


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 May 7 1st Friday of the month, 10am - 12pm Denise Kish 909-519-4410 Jim Langdon 714-392-2052

Costa Mesa: Man to Man 1st & 3rd Wednesday 1:30 - 3pm Frank Austin 714-925-4100 Mike Milne 949-215-8502

Dana Point: Minimal Symptoms / Newly Diagnosed 4th Thursday, 10am - 12pm Jerry Dowd 949-584-4619 Susan Watson 949-493-1299

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 Celine Miller 949-361-0878

Mission Viejo: Minimal Symptoms / Newly Diagnosed 2nd Wednesday, 6:30 - 8pm Jerry Dowd 949-584-4619 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.

TOLL FREE NUMbER 1 800 344 4867 | 11

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

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

Escondido: Christian Group 3rd Friday, 1-3 pm Calvary Chapel of Escondido 1675 Seven Oakes Rd, Room 4 Dawn Vallely 760-390-1777

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 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


AQuATICS

Chula Vista: Outdoor Loma Verde Pool 1420 Loma Lane Tuesdays & Thursdays 12 - 1pmDryland option available during the winter.Katie Freiert (714) 689-9601

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

Irvine: Indoor Arthritis Foundation Approved Class Waterworks Aquatics 25 Waterworks Way Tuesdays & Thursdays 11:30am - 12:30pm No lift available at this time

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

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

IN yOuR NEIGhbORhOOD

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

bALANCE

STRENGTh TRAINING

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

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

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

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

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

TOLL FREE NUMbER 1 800 344 4867 | 13

LIVING WITh MS

LEARN AbOuT MS -- ANyTIMEFor 10 years, MS Learn Online has provided educational webcasts, featuring health professionals from all over North America, accessible at nationalMSsociety.org/mslearnonline any time, day or night. A recent feature presentation is “Getting a Good Night’s Sleep with MS,” in which Rock Heyman, MD, chief of the division of Neuroimmunology and director of the MS Center, the university of Pittsburgh, explains why people with MS seem to be more prone to sleep disorders. He has some tips for dealing with the problem.

Another new presentation is on Gilenya, the first oral disease-modifying therapy to be FDA-approved. Aaron Miller, MD, professor of neurology at Mount Sinai and medical director at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis in New york City, discusses Gilenya in two sessions covering how it works, who might benefit, pros, cons and potential side effects. There are more than 50 other Learn Online videos available.

Explore Learn Online Videos on the Internet

Basic Facts of MS•

Treatments•

Symptom Management•

Healthy Living•

Progressive MS•

Research•

Family Life•

Relationships•

Employment•

Insurance•

And more•

On the first and third Thursdays of each month, two new videos are added. An update on disease-modifying therapy is generally added once a year.

IN A huRRy? Visit Daily Minutes. In 60 seconds you’ll get some basics on Who Gets MS, What is Myelin, What is Relapsing-Remitting MS– and more. Click on the Daily Minute link in the blue box at nationalMSsociety.org/mslearnonline.

GOONLINE

Transcripts (.pdf format) and podcasts (.mp3 audio format) are available for most programs.

Correspondents who interview the MS experts not only have a professional background in broadcasting, they have MS themselves. “So what they want to know is often what other people with MS want to know,” said Julie Gibson, special projects consultant for the Society.

Sign up at nationalMSsociety.org/mslearnonline to receive an e-mail whenever a new webcast debuts.


SuppORTING ThE MISSION

The following volunteers were recognized at our Annual Meeting of Members on January 22. We are grateful for the many years of their support of our mission to create a world free of MS.

OuR SAN DIEGO COuNTy OFFICE IS MOVING!

We need a new group of office volunteers to help with upcoming events as well as daily office needs. 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].

Our new office will be located off Scripps Poway Parkway. More details coming soon!

VOLuNTEERSNEEDED

ThANk yOu TO OuR 2010 STAR VOLuNTEERS

bike MS bay to bay Tour Volunteer of the Year Randy Williams

Challenge Walk MS Volunteer of the Year Ryan Mahoney

Community Partner of the Year Raphael’s Party Rentals

Community Partner of the Year HOAG Hospital

Corporate Partner of the Year Sullivan Moving & Storage

golden Circle Volunteer of the Year Rick Hausman

Health & Wellness Partner of the Year Dr. Nirav Patel

Health Care Provider of the Year Dr. Jody Corey-Bloom

Lifetime Commitment Award Dawn Beattie

Media Partner of the Year KTLA

MS Activist Volunteer of the Year Rob Lammers

MS Ambassador of the Year Rabiah Coon

MS Angel Visitation Volunteer of the Year Ashley Swartz

MS Dinner Auction Volunteer of the Year Ellen Beshears

MS General Office Volunteer of the Year Audrey Jackson & Terry Cappella

Programs Community Partner of the Year Tom Mellor

Programs Volunteer of the Year Mike Milne

Programs Volunteer of the Year Lee Bulfin

Research Volunteer of the Year Dr. Michael Demetriou

ChApTER STAR VOLuNTEERS OF ThE yEAR RENATA SAHAGIAN & GIL ORTEGA Renata started volunteering at the chapter thirteen years ago. After learning her mother had MS, Renata wanted to put her efforts towards helping to find a cause and cure for the disease. From the beginning, she went above and beyond by fundraising and being a leader at of our events. Renata has completed endurance events in California and Nevada raising close to $20,000! Since marrying Gil in 2006, he has joined her as a leader and together the two of them are dynamic activists putting on their own fundraising events, encouraging their friends to be participants at MS events as well as being volunteers. Thank you, Renata & Gil!

Renata & Gil were also recognized at the CHAD awards as integral volunteers for the chapter

Self Help group Leader Volunteer of the Year Peggy Green

Service Provider of the Year Lee Satschale

Walk MS Volunteer of the Year Jackie & Tim Oates

TOLL FREE NUMbER 1 800 344 4867 | 15

ChALLENGE pREVIEW

COLLEEN bROWN DARES yOu TO TAkE ThE ChALLENGECHALLENGE WALK’S

2010 MOST INSPIRATIONAL

WALKER SHARES HER

REASONS FOR WALKING

50 MILES OVER 3 DAyS FOR

THE PAST DECADE

bIkE MS RAISES $2.2 MILLION!The Bike MS Bay to Bay Tour sponsored by Land Rover Miramar celebrated its 28th year October 16-17, 2010. Almost 2,500 cyclists raised over $2.2 million towards a world free of MS, as cyclists at all levels of expertise rode down the picturesque coastlines of Orange and San Diego counties completing a 30, 100 or 150-mile ride.

Thank you to the following sponsors: Land Rover Miramar, Continental Airlines, Hansen Beverage Company, KTLA, Qualcomm, Disneyland Resort, BJ’s Restaurant and Brewhouse, ACE Relocation Systems, Inc. and Westfield Plaza Camino Real.

Registration for the 2011 Bike MS Bay to Bay Tour, taking place October 22 & 23, 2011 opens in February. Visit biketofinishMS.com for more information.

Q: When were you diagnosed with MS and how did that affect you? A: Coincidentally, I was diagnosed 10 years ago, in February 2001. That diagnosis served as a reality check for me. Once I got over the initial shock, I decided to make the most of each and every day.

Q: Why did you join the Challenge Walk and what was it like that first year? A: I have always done other physical charity events. When I was diagnosed, I figured I should concentrate my efforts a little closer to home. That first year was life changing. I walked away -- ok, I limped away --feeling like there was NOTHING I couldn’t do.

Q: How has the event changed over the past 10 years? A: The early years included sleeping on gymnasium floors and shower in portable shower trucks. We’re now in hotel rooms; I was nearly brought to tears of joy at the end of the first day while soaking in the bath tub of my hotel room! In all seriousness, the event gets better each and every year.

Q: What’s your favorite part of Challenge Walk MS? A: The thing that really stands out is the camaraderie. There’s something very special about being surrounded by an amazing group of people that are whole-heartedly dedicated to putting an end to this disease. I also look forward to meeting new people each year; learning their reason for participating inspires me. These people become more than just friends; they become extended family members.

Q: Why should other people participate? A: You honestly don’t know what you are capable of until you complete a Challenge Walk. It really is life changing.

Q: Anything else we should know? A: I once challenged my team to raise $50,000. I told them if they raised that amount, I’d let them shave my head. They responded by raising almost $70,000 and they shaved my head on stage in front of our fellow Walkers. Yeah, life changing all right.

Join Challenge Walk MS for its Anniversary Celebration! on September 23-25 by visiting myMSchallenge.com or

calling (800) 486-6762

Colleen holds up her team’s top fundraising award at one of the nighttime ceremonies at

Challenge Walk MS 2010


RESEARCh yEAR IN REVIEW

Exciting advances were made in 2010 in virtually every field of MS research. The National MS Society continues to propel research forward with a comprehensive research strategy and program. This year we provided $36 million to support some 325 new and ongoing projects, including everything from discovery research to the Society’s commercial drug development efforts through Fast Forward. In addition, thanks to the efforts of our MS activists, $4.5 million was specifically set aside for funding MS research out of the 2010 Department of Defense budget.

This year the Society launched new projects focusing on discovering risk factors that lead to progressive disability, projects aimed at speeding diagnosis, research on protective mechanisms of vitamin D and estrogen, tests determining whether a new device can improve walking ability, and many more. The Society’s listing of Clinical Trials in MS 2010 includes 129 ongoing studies ranging from research of oral therapies for treating MS or its symptoms to novel agents such as green tea extracts, and a study of the antioxidant idebenone in people with primary-progressive MS.

The following are highlights from the many important, potentially high-impact research results that occurred this year, presented according to the Society’s three key research approaches: stopping MS, restoring function, and ending MS forever. For more details, go to our Website (www.nationalMSsociety.org) in the Research/Research News section.

2010: A yEAR OF SIGNIFICANT pROGRESS IN MS RESEARCh

Dr. Jeffery D. Kocsis, Collaborative MS Research Center Award Principal Investigator., Yale University School of Medicine

TOLL FREE NUMbER 1 800 344 4867 | 17


TOWARD STOppING MSExciting progress was made toward finding better therapies for MS, including the availability of the first disease-modifying therapy for MS taken by mouth.

under way, and the company has applied to the FDA for marketing approval.

• Teriflunomide (Sanofi- Aventis) is a novel oral compound that inhibits the function of specific immune cells. Results from a two-year, phase III trial in 1,088 people with relapsing MS, comparing two doses against placebo, showed that both doses significantly reduced the rate of MS relapses by up to 31.5% relative to placebo, and the higher dose was found to reduce the risk of disability progression by 29.8% compared to placebo. MRI scanning showed reduced risk of new MS lesions and reduced disease activity. The most common side effects were nausea, diarrhea, mildly elevated liver enzymes and thinning of the hair. Additional trials of teriflunomide are underway.

• Over $2.4 million was committed by the National MS Society (uSA) and the MS Society of Canada to support 7 grants on CCSVI (chronic cerebrospinal venous insufficiency) to determine its role in the MS disease process. The studies, launched July 1, were deemed necessary because it is not known yet whether, or if so how, CCSVI contributes to MS disease activity.

• At least two small clinical trials are currently underway – one at the university of Wisconsin supported with funding from the National MS Society – testing the idea that infection with intestinal parasites may reduce immune attacks in MS. This relates to the “hygiene hypothesis,” the idea that MS may be less common in underdeveloped regions because early exposure to common infections stimulates immune responses that help offset the attack on the brain and spinal cord in MS.

• Gilenya™ (Novartis International AG) capsules were approved by the FDA for reducing the frequency of clinical relapses and delaying the accumulation of physical disability in relapsing forms of MS, making it the first oral disease-modifying therapy for the treatment of multiple sclerosis. Cleveland Clinic doctors voted this among the top 10 medical breakthroughs of the year.

• Positive results from the phase III trial of oral Cladribine (EMD Serono), known as the CLARITy study, were published showing that it reduced relapse rates compared to placebo by up to 57.6% in a study involving 1,326 people with relapsing- remitting MS, and also showed other benefits. Additional studies are


• In a study of over 5,000 people with MS, researchers identified characteristics that may help predict the rate of disease progression, or worsening. Motor symptoms at onset (such as muscle stiffness known as spasticity) and male gender were associated with a faster progression from relapsing-remitting MS to secondary-progressive MS. The investigators, at the university Medical Centre Groningen, The Netherlands, the university of British Columbia and elsewhere, were funded by the National MS Society, the MS Society of Canada and others.

• The FDA approved the marketing of Ampyra™ (dalfampridine, formerly known as fampridine SR, from Acorda Therapeutics) for its ability to improve walking in people with any type of multiple sclerosis.

• The first drug specifically developed to treat uncontrollable laughing or crying, also called pseudobulbar affect, or PBA, was approved by the FDA. Nuedexta™ (dextromethorphan hydrobromide and quinidine sulfate, formerly called AVP-923, Avanir Pharmaceuticals) is an oral therapy shown to significantly reduce episodes in people with MS, ALS and other disorders.

• Researchers co-funded by the National MS Society have identified a molecule that appears to stimulate the brain’s natural ability to repair myelin in rodents. Myelin is the insulating coating on nerve fibers that is damaged in MS. The finding, which needs further research to translate to human disease, resulted from a massive hi-tech screening system to identify new strategies to repair nervous system damage in MS. Collaborators at the university of Cambridge, university of Edinburgh, and others were funded by the National MS Society’s Promise:2010 Nervous System Repair and Protection Initiative, the MS Society of the uK and Northern Ireland, the ARSEP Foundation, and others.


TOWARD STOppING MS CONTINuED

TOWARD RESTORING FuNCTION

Progress was made toward finding ways to repair nervous system damage and toward improving quality of life and specific MS symptoms through exercise, meditation, rehabilitation and medications.

TOLL FREE NUMbER 1 800 344 4867 | 19


• The largest study of its kind showed that mindfulness- based meditation significantly improved health-related quality of life, depression, and fatigue in a study involving 150 people with relapsing- remitting and secondary- progressive MS. This controlled study by university Hospital (Basel, Switzerland) researchers shows the value of an alternative treatment and highlights the importance of focusing on quality of life issues to improve well being.

understanding of factors that influence whether a person develops MS deepened this year, bringing us closer to finding ways to prevent the disease.

• Two new studies added to evidence for a possible role for Epstein-Barr virus (EBV) in the development of MS. In one, Harvard School of Public Health investigators showed that an EBV-positive blood test preceded MS diagnosis in a large sample of MS cases identified through U.S. military databases. In another, an international team reported that reactions to a specific protein associated with EBV were increased in people with MS compared with siblings who did not have MS. However, another study from the university of Colorado Denver School of Medicine found no evidence of EBV infection in the central nervous system of people with MS.

TOWARD ENDING MS FOREVER

TOWARD RESTORING FuNCTION CONTINuED

• Harvard School of Public Health researchers showed that two individual factors that were previously identified as increasing the likelihood of developing MS – exposure to Epstein- Barr virus and tobacco smoking – may interact and multiply to substantially increase the risk of developing MS in those with both risk factors. The results warrant confirmation in further studies.

These and many other efforts by researchers around the world reflect the rapid pace of MS research today.


CALENDAR OF EVENTS

FEbRuARy24 SSDI Information Day26 Moving Forward: The Newly Diagnosed Seminar MARCh10 boys’ Night Out26 UCSD MS Symposium ApRIL9 walk MS: Irvine30 walk MS: San Diego MAy1 walk MS: Carlsbad2 golf MS Invitational14 Annual Family Day at the bay

For more events, visit the Mark Your Calendars section on page 8

NON-PROFITORGANIZATION

u.S. POSTAGEPAID

San Diego, CAPermit # 451

Pacific South Coast Chapter

12121 Scripps Summit Drive, Suite 190San Diego, CA 92131

Documents

Winter 2011 - MSConnection