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Spring 2014

Southern California & Nevada Chapter

MS Connection Newsletter

spring into health and wellness get movin’ with special events

living well with MS

story page 8

story page 17

INSIDE 04 THIS ISSUE

research

06

08

17

access to care

special events

programs connection


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MS connection: Spring 2014

letter from the president

get movin’

As we go to print on this issue, we’re entering a busy spring season, with action-packed events and wellness programs for people who care about multiple sclerosis.

4th of july at the hollywoood bowl Join us for our 15th annual MS Family Night at the Hollywood Bowl on Friday, July 4, 2014. Enjoy performances by Steve Martin and Steep Canyon Rangers featuring Edie Brickell, followed by a spectaculor fireworks show. Contact Tiffany Jordan at 310479-4456 ext. 66130 for ticket information.

Connect with us online: www.nationalmssociety.org/CAL Like us: facebook.com/MSsoutherncal Follow us: twitter.com/MSsoutherncal Watch us: youtube.com/MSSoCalChapter

During MS Awareness Week, March 3 - 9, 2014, we shared our connections across the nation, spreading powerful and much-needed awareness. Immediately after, our inspiring MS Activists headed to Washington D.C. for the 23rd annual MS Public Policy Conference, where we lobbied for issues that are important to the MS movement. Let’s get ready for Spring! April and May are jam-packed with twelve Walk MS events across Southern California and Nevada. Walk MS is where we connect and show the power of our connections by fundraising, participating and volunteering. Grab a friend and register today! It’s also the perfect time to register for our new Bike MS Coastal Challenge: Santa Monica to Santa Barbara coming up in October (details on page 8). We are also thrilled to share news about our new telemedicine programs in Kern and Ventura Counties (details on page 6), as well as announce the grand opening of The Wellness Center, a collaborative space in Los Angeles that will bring wellness programs and services to the local community. With so many new opportunities to connect, I invite you to get movin’ and join us at one of our upcoming events or programs. You can also stay connected on our new and redesigned website, www.nationalMSsociety.org/CAL. n


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advocacy

2014 Public Policy Conference The 23rd annual MS Public Policy Conference took place in Washington D.C. March 10 - 12, 2014. Hundreds of MS activists from every state gathered to lobby in support of this year’s public policy priority issues. Activists urged Congress to: • Support funding for the National Institutes of Health (NIH), MS research through the Congressionally Directed Medical Research Programs (CDMRP) and the Food and Drug Administration (FDA).

National Multiple Sclerosis Society Southern California & Nevada Chapter WE MOVED! 5150 W. Goldleaf Circle., Ste. 400 Los Angeles, CA 90056 1-800-344-4867 Chair: Kim Phillips Chapter President: Susan Bradley Editor: Emily Hazlett © 2014 National MS Society, Southern California & Nevada Chapter; Published Quarterly—Spring 2014

• Co-sponsor a bill that would create a separate benefit in Medicare for complex rehab technology, protecting access to complex rehab power wheelchairs for those with progressive MS (H.R. 942/S. 948). • Join the Congressional MS Caucus, showing commitment to finding policy solutions to those affected by MS.

take action

The MS Public Policy Conference may be over, but our efforts to push these priority issues must continue. Join the MS Activist Network at www.nationalMSsociety.org/ActivistToolkit to sign up to receive news and updates on health policies, help find solutions to MS issues, and take action on legislation that matters. n 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. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.


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MS connection: Spring 2014

research

MS risks and triggers by Nicholas LaRocca, P H D

If we knew exactly what causes multiple sclerosis, we might be able to prevent anyone from ever getting the disease again. But even more relevant to people who already live with MS is new evidence for risk factors that may make their disease worse – or better. A lot of progress in this area was reported last October at ECTRIMS, the world’s largest gathering of MS researchers, on MS risk factors and triggers. For example, in a large population study by Dr. A.K. Hedström and team from Stockholm, Sweden, it was confirmed that cigarette smoking increased the risk for developing MS at any age, and climbed with the amount smoked. The researchers also found that quitting smoking brought that risk back to normal within a decade. The same team reported that smoking could increase a person’s risk of developing the kind of antibodies in their blood – called neutralizing antibodies – that can block the ability of interferon beta to reduce MS disease activity. Another excellent reason to quit.

What’s in the genes We know genes contribute to MS risk, but that’s not the end of the story. Dr. H. Westerlind reported on a study by a team from Solna, Sweden, that took advantage of MS patient registries in Sweden, one of which dates back to the 1800s. They took a fresh look at how much having a family member with MS, particularly an identical or fraternal twin, increases chances of getting the disease. The researchers found that the risk of an identical getting MS if the other twin has the disease was lower than in prior reports, but still much higher than in fraternal twins. This study suggests that that the role of genes may be more complicated than previously suspected. (To read more about genetic risks, go to www.nationalMSsociety.org/genetics.) The mystery of genetics and MS is driving more studies that look at how genes interact


nationalmssociety.org/cal | 1-800-344-4867

with a person’s environment and lifestyle. Danish researchers Dr. A.B. Oturai and colleagues from Copenhagen looked at a group of potential risk factors, including known MS susceptibility genes, obesity in early adulthood, previous mononucleosis and high teenage alcohol consumption. They found that each of these factors contributed to lowering the age at which an individual was diagnosed with MS. A related study suggested that preventing teen obesity in people with MS susceptibility genes may reduce their risk of developing MS.

Watch the salt Recent studies have pointed to salt intake as a possible risk factor for developing MS or for making mice with an MS-like disease worse. (Read more at www.nationalMSsociety.org/ salt.) But new evidence presented this week by Dr. M.F. Farez and colleagues in Buenos Aires and Boston suggest that high salt intake may also increase MS exacerbation rates and MRI-detected disease activity in people who have the disease. It will be important to do further research in this area to confirm these results in larger numbers of people and to figure out what levels of salt in the diet might be considered OK for people with MS.

What you eat Clinical trials are also getting underway to test whether increasing an individual’s vitamin D levels can delay the development of MS. The National MS Society is supporting a trial to see whether vitamin D supplements can reduce MS

5 activity in people already diagnosed. Visit www. nationalMSsociety.org/vitaminD to learn more. Another emerging area of research is the gut microbiome – colonies of trillions of bacteria that inhabit our intestinal tracts, most of which are beneficial. The immune activity that occurs in the gut, and which is related to the immune system, may help dictate other aspects of health, including the activity of an individual’s MS. A lecture by Dr. O. Borbye Pedersen of Copenhagen made it clear to me that this is a very promising field of study. If we could decipher the influence of the gut microbiome, we have the potential of altering it to treat or even prevent MS. Taken together, maybe there’s some truth to the old adage, “You are what you eat.” Follow MS research by signing up for MS eNews at www.nationalMSsociety.org/signup. n Dr. Nicholas LaRocca is a clinical psychologist who has worked in the field of MS for over 30 years and is the Society’s vice president of Health Care Delivery and Policy Research Originally published at www.MSconnection. org/blog.


6 access to care

telemedicine Just six months ago, the Ventura County Medical Center, in partnership with the Southern California & Nevada Chapter, launched a telemedicine program which aims to serve a population of uninsured and underinsured people living with MS in rural and remote areas. In February 2014, another site was opened at Kern Medical Center in Kern County. Dr. Barbara Giesser, Clinical Director of UCLA MS Clinical Services, serves as the primary MS Specialist for this new and unique program. MS Clinic Days will be scheduled when local neurologists have a patient needing a second opinion on an MS diagnosis or new treatment management plans. Medical histories will be forwarded in advance of the consultations, which will be conducted by Dr. Giesser. Both UCLA and the local sites will use telemedicine equipment consisting of videoconferencing units that enable real time, high quality, faceto-face visits. The consults will offer input on diagnosis and/or treatment, and will develop a care plan to manage the course of each person’s disease. “We hope to have 25 to 30 people seen through this project in the first year, and are hoping that people who have this opportunity in these communities will be able to confirm their MS diagnosis, better understand their symptoms and need for other treatment options,” said Audra Hindes, Senior Director for Clinical Programs, Services, and Advocacy. n

MS connection: Spring 2014

community wellness This spring, The Wellness Center at the Historic General Hospital (LAC + USC Medical Center) in Los Angeles will open the door to a communal space that will connect patients to wellness care. As a tenant, the National MS Society will be able to provide nocost wellness services in English and Spanish, including the Society’s CogniFitness program, family and social support, lifestyle workshops and more. The Wellness Center was formed by a partnership between First District Los Angeles County Supervisor Gloria Molina and The California Endowment. 18 like-minded non-profit organizations will share the space, encouraging collaboration between nonprofit groups. Members visiting the Center can also benefit from other services offered by participating organizations, such as mental health services, legal counseling and more. “We are very excited about The Wellness Center and being able to offer services in the community,” said Mercy Willard, Senior Director of Community Development and Outreach. “This opportunity allows us to expand our scope of services and formalize partnerships with numerous community-based organizations and universities.” n


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living with ms

find support and get connected For the past fifteen years, Margo Duke has fostered connections within the MS community as a volunteer with Peer Connections. The program connects someone with a trained volunteer who has MS and is dedicated to helping navigate the challenges of the disease. Margo reaches out to her peers by phone at least once per week to share helpful tips, suggestions and offer emotional support in areas of need. “When I first started, most of the people I spoke with were newly diagnosed, facing many uncertainties with their disease. Throughout the years, I’ve helped them work through issues and overcome barriers. The peer relationships is crucial for this,” said Margo. Peer Connections volunteers can help diminish feelings of isolation that sometimes come with the disease. “It’s nice to be able to talk with someone who understands what you’re going through. You really learn a lot about yourself and MS.”

The Peer Connections program is made possible by the generous support of Teva, Genzyme, Genentech, Acorda Therapeutics and Bayer Healthcare.

MARgo, diagnosed in 1994 Connecting with others with similar life experiences can inspire positive personal change. Find and connect with people like you to share your experiences and get support. • Join volunteer-led support groups—online, by phone or right in your community. Even available in Spanish! • Connect with a peer support volunteer oneto-one through Peer Connections. • Get involved! Participate or volunteer in special events, like Walk MS or Bike MS, that raise money and awareness for MS. • Visit our online communities at MSConnection.org and start connecting today. Find support and get connected! Visit www.nationalMSsociety.org/CALservices or call 1.800.FIGHT.MS (1.800.344.4867). n


8 Bike ms

TAKE THE NEW COASTAL CHALLENGE: Santa Monica to Santa Barbara! It’s a new year and a new route at Bike MS Coastal Challenge: Santa Monica to Santa Barbara on October 11 & 12, 2014. Day 1 of our new route offers three different, but equally beautiful, cycling options for our riders. Our 65 and 100 mile riders begin their journey in picturesque Santa Monica and head north, experiencing sweeping ocean views, rolling foothills and some challenging, but rewarding, hill climbing. Our 30 mile riders will start and end their day at San Buenaventura State Beach

MS connection: Spring 2014

in Ventura, where they will join the 65 and 100 milers for an evening of food, massages, music and fun! Stay the night in one of our host hotels or set up camp by the beach. Riders head north on Day 2 after enjoying a hot and delicious breakfast and continue up the beautiful central coast with 35 or 50 mile routes. Celebrate your accomplishments as friends, family and volunteers cheer you across the finish line at your final destination: Santa Barbara.

GET INVOLVED TODAY! • Register as a Cyclist and take advantage of our Early Bird pricing until May 31, 2014. • Give the gift of time and register as a Volunteer. It takes hundreds of volunteers to make Bike MS a success, and we have a variety of positions available for individuals and groups. Visit www.bikeMSsocal.org to register or call 310-479-4456 for more information. n

Bike MS Coastal Challenge: Santa Monica to Santa Barbara 2014 2 days // 30 - 150 miles


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nationalmssociety.org/cal | 1-800-344-4867

walk MS

why I walk ms by desiree jones

My story began last July when I started to find it extremely hard to balance and walk. My legs and feet felt like they were asleep and my skin felt like it had plastic all over it. As the days passed, I lost control of other parts of my body and knew something wasn’t right. My doctor sent me to the hospital where I was diagnosed with multiple sclerosis at the age of 23. Before I was diagnosed, I was working multiple jobs, going to graduate school, running, and basically kicking life’s butt. Since my diagnosis, I have had the opportunity to conquer many of the battles that those of us with MS face. I’ve had double vision, numbness and tingling, speech problems, fatigue, and not to mention it’s pretty difficult getting my hair to look fresh when I have no feeling in my fingers. Even with all that added to my plate, I’m proud to say that I’ve been able to gain back everything that I was able to do before, except now I get to say that I’m doing it with MS. What can I say? I like challenges. Every day I feel like I face a new battle, and I never know what symptom will be next. It may sound crazy, but sometimes I feel lucky to have MS. If I didn’t, I would still be walking through this life not appreciating all of the things that many of us take for granted. I am participating in Walk MS because I know how fortunate I am to be one of the people

desiree, diagnosed in 2013

strong enough to gain back my ability to walk, run, think and laugh. I want to help raise as much money as possible for more research to be done so that we can one day live in a world where there isn’t MS. n

register today! APRIL 6, 2014 Greater LA, Pasadena Rose Bowl APRIL 12, 2014 Conejo Valley, Conejo Creek Park Desert Cities, Palm Desert Civic Center Park Fresno, Fig Garden Village San Luis Obispo, Sinsheimer Park APRIL 26, 2014 Inland Empire, Citizens Business Bank Arena Las Vegas, Sunset Park Long Beach, Shoreline Park MAY 3, 2014 Antelope Valley, Lancaster Marketplace Big Bear, North Shore Elementary School Reno/Sparks, Idlewild Park Terrace Santa Barbara, Leadbetter Beach SEPTember 13, 2014 South Lake Tahoe, Camp Richardson October 25, 2014 Bakersfield, The Park at River Walk


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MS connection: Spring 2014

Thanks to the generosity of the following donors, more than $1.67 million was contributed to Golden Circle during the 2013 Campaign.

CIrcle of distinction ($1 million+) Angel ($500,000 - $999,999) Benefactor ($250,000 - $499,999) Steve & Caroline Kaufer Family Kenrose Kitchen Table Foundation Joan & J. David Power, III

patron ($50,000 - $249,999)

The Tuffli Family Foundation Victoria & William Marraccini

Sponsor ($10,000 - $49,999)

Anonymous (3)  • Jennifer Berkley & Alan Jones • Elaine & John V. Bock, Jr. • John A. Duran, John Amado Duran, Jr. & Austin Ryan Fuentes • Elerding Family Foundation • The Rhoda Goetz Foundation for Multiple Sclerosis, Kevin Goetz • Terry Gilmore-Nixon & Charlie Nixon • Shirley & Burt Harris Family Foundation • Philip Hohnstein Family Foundation • Julie Kaufer & Frank Reddick • Rita Malkin • Pamela & Stanley E. Maron • Milken Family Foundation • Sandra Milken • Andi & Robert Parker • Karen Ritchie • Dr. Loren E. Sanchez & Sharron Sanchez • Conrad Schlum Charitable Trust, Joan & Arnold Seidel • Fern & Bob Seizer • Dina Tecimer & Masood Sohaili • Janice & Timur Tecimer • The Susanne & Gary Tobey Family Foundation • The Warren/Soden/Hopkins Family Foundation, Anna Marie & Bob Warren • Elaine Wynn • Stephen B. Yoken

Friend ($5,000 - $9,999)

Anonymous (3) • AEGON Transamerica Foundation • Claudia Barski & Peter Carian • Donna & Dr. Walter Bauer •

Bloomingdale’s • Marla Bradley & Mike Lambert • Kappy Bristol & James D. Bristol • Lynn & Bradley Califf • The Corgel Family • Cushman & Wakefield • Samuel DeLuca • Julie & Barry Engelman • Elvie & Yale Gieszl • Sam & Rena Given Foundation, Cristine & David Card • Charlotte & Dr. S. Lawrence Jacobs • Tatiana & Todd James • Jaquish & Kenninger Foundation • Marca Kaufer • Kay & John Krattli • Dorothy Lawyer • Dr. Andrew Lewin • Michael J. Lichner • Oarsmen Foundation, Dee & George Schuler • Ronald L. Olson Foundation, Joan & Ronald Olson • Eleanor Hutchinson Parker Foundation • Phi Alpha Kappa Sorority • Julie & James D. Power, IV • Eugenia Riordan Mulé • Jerome & Faith Pearlman Foundation, Faith Pearlman • Rope for MS, Tara Maxeiner • The Skynyrd Foundation • Louise Laraway Teal Foundation • Linda & Dennis Vaughn • Frederick R. Weisman Philanthropic Foundation, Billie Weisman • Barbara Wilson & John Phillips • Cynthia Zagieboylo & Marc Gaudette

Leader ($2,500 - $4,999)

Anonymous (3) • Emily & K. Zachary Abbott • Christopher Anderson • Joanne Beckwith • Vicki & Robert Bond • Judith Bronowski • Eileen & Gary Caris • Stacie & Philip D’Amour • Sandra & Bernard Fischbach • Ann & Dave Gooding • Lisa & Michael Gragnani • Beatrice & Michael Hencel • Dr. Alex Krammer • Donald C. & Diane S. Lake Family • Sharon & Hal Lampert • Cynthia & Michael Malone • Tzviah & David Mayman • Geneva McCaron • C & R Newman Family Foundation, Christine & Richard Newman • Karen Randall & Henry Hines • Sheri Mills Safan • Nancy & Mark Samuels • Sheryl & Barry K. Schwartz • Marcia & Mark Smith • Ruth Lynn & Hank Sobel • Irene V. Steinman • Claudette L. & Henry L. Taylor, Jr. • Jane & Lester Trachman • Carrie & Rayne Waller • Terry Weeks • Melissa & Robert Weiler • Jane Lee & Larry Winter • Helena Wood Pietro • Anne Woodyard • Howard Yamada • Carolyn & Gary Youngberg • Ella Zarky

Member ($1,000 - $2,499)

Anonymous (3) • Barbara & Richard Ackerman • James Avedikian • Randi Burke-Aguiar & James Aguiar • John Albers • Terry Bass • Michael Bearman • Robert Beeston • Bonnie & Richard Bell • Lewis Black • Camilla & Arnold Bramlett • Brooks Family Trust • Nicholas Bruyer • Julia & James Burge • Debbie & James Burrows • Katherine Burrows • Nina Byers • Sherie & Stephen Carroll • Maria Casas • Cynthia & Mark Cendrowski • Climbing Mountains to


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Cure MS, Inc. • Louise & Florence Cohen Fund, David Clark • Dr. Clinton Coil • Conwell Charitable Trust • Colonel John S. Costello • Edward Court • Karen & Ryan Craig • David Creal • Benjamin Dent • Janet C. Dirks • Annette Do & Bill Gibson • Dreier Family Foundation • Shelley & Joe Drnek • Gary East • Joyce English • Katherine Enright • Charlie Fabian • Dona J. Filkins • Betty G. Fillipin • Ralph Finerman • Gloria & Stanley Fishfader • Scott Flood • Eileen & Don Fracchia • Margaret Gage • Donna & James Gallagher • Enid & Sheldon Goldman • Judy & David Goldstein • The Wilbur C. Grosse Trust, Maria Elena Munoz • Heather & Paul Haaga • Nancy & William Hammond • Jamie Hanson • Eleanor & Jack Harter • Arlene & Richard Havel • Jody Helft-Moss & Dennis Moss • Martha H. Horton • Linda & Roger H. Howard • Denise & Paul Huether • ISEC Foundation • Matthew Jenkins • Robin & Steve Kalota • Karen & Don Karl • Ken L. Keltner • Russell Kneipp • Lloyd Silver Levine • Pauline & Samuel Li • Ronda & Barry Lippman • Christopher Lloyd • Peter Maller • Betsy & Robert Manger • Glenn Martin • Amy & Michael Mayfield • Dr. Cynthia McGranahan & Lyle Dawn • Paula Medeiros • Linda Mellick • S. Patrick Mellier • Sue & Ed Meltzer • Irene Mendon • Eileen & Steve Meuris • Susan & Paul Michael • Sheryl Miller & Dr. Robert Schilling • Deborah L. Mlynarski • Daniel Monick • Helena & Richard Neidorf • Claudette Nevins & Benjamin Pick • Debi & Dave Normington • Barbara A. & Paul T. Norton • Janet Offel & Michael Nebenzahl • Gerald Offsay • Dr. Rama T. Pathi • Jason Peterson • Kimberly & Jeff Peterson • Kimberly Phillips & Ross Skinner • Phillips Lerner, A Law Corporation • Ed & H. Pillsbury Foundation, John Pillsbury • Allane & Jeffery Quirk • Pam & Josh Reims • Jim Rigney • Ric Robertson • Strawn Rosenthal • Marcella Salkowski • The Saluto Foundation, Kim & Jim DeLapa • Ellen & Richard Sandler • Eduard Sarkisov • Debra Schiff • Priscilla & Harold Schroeder • Susan Schroeder • Cynthia & Jeffrey Shaw • Robert Siegel • Sally & Dr. Robert Smith •Susan Steinhauser & Daniel Greenberg • Bruce Stone • Jessie Anne Tait • Adam Tarshis • Jayne & Kelly Tien • Gail & John Thomason • Evelyn & Jeffrey Tolin • Cynthia A. Torres & Michael V. Gisser • James S. Tyre • Velvet, LLC • Lorna & Dr. Shelby Wagner • Anne Wayne • Andy Wexler • Mary & Richard Whiting • Whitney Young Children’s Foundation • Diana & Chester Widom • Philip T. Winik • Jan & Stephen Winston • Yanuck Family Trust, Annette & Gil Yanuck • Dr. Myles J. Zakheim • Auda L. Zurcher

We also gratefully acknowledge all of the donors who contributed more than $50,000 to the 2013 Golden Circle with gifts up to $999—Thank You!

Challenge accepted. Challenge met. The 2013 Golden Circle Year End Challenge was an amazing success! We are thrilled to announce that, for the 7th year in a row, Golden Circle donors rose to the challenge posed by the Kenrose Kitchen Table Foundation and the Steve & Caroline Kaufer Family. With the generosity of hundreds of individuals, family foundation and corporations, the Golden Circle campaign met and surpassed the year end goal of $550,000, raising nearly $765,000 between 10/1/2013 and 12/31/2013. As a result, the Golden Circle campaign raised more than $1.67 million in 2013! The contributions from this year-end challenge will assist those living with multiple sclerosis and provide hope through research. The Chapter extends its deepest appreciation to the Kenrose Kitchen Table Foundation and the Steve & Caroline Kaufer Family for their passion, leadership and tremendous support to help create a world free of multiple sclerosis. If you are interested in learning more about Golden Circle, please call Elicia Lopez at 310.479.4456 ext. 66111.


12 giving

MS connection: Spring 2014

Benevolent backers

• $5,000 from the Friends of Mercy Foundation’s Sister Phyllis Hughes Endowment for Special Needs toward the Improving Access to MS-Related Health Care Initiative in Kern County.

We are grateful to the foundation and corporate supporters that contributed $197,200 in grant awards between November 16, 2013–March 1, 2014:

• $4,000 from the Lockheed Martin Aeronautics Employees’ Reaching Out (AERO) Club to support the delivery of the Relationship Matters program.

• $85,000 from the UniHealth Foundation to support the new Center of Optimal Living with MS at The Wellness Center at the Historic General Hospital.

• $2,500 from the Montecito Bank and Trust toward the Chapter’s Supporting the Family Program in the Santa Barbara and Ventura Counties.

• $35,000 from the Hurlbut-Johnson Fund of the Silicon Valley Community Foundation to support The Marilyn Hilton MS Achievement Center at UCLA.

• $1,000 from the Carl E. Wynn Foundation to support The Eric Small Centers for Optimal Living with MS.

• $25,000 from the Wood-Claeyssens Foundation to support the Better Living program initiative in the Santa Barbara and Ventura Counties. • $17,500 from the Friends of the National Multiple Sclerosis Society in general operating support for the Northern Nevada Regional Office. • $10,000 from the Donald T. Sterling Charitable Foundation to support local programs and services. • $7,000 from the Conrad N. Hilton Foundation to support The Marilyn Hilton MS Achievement Center at UCLA. • $5,000 from the Albert and Elaine Borchard Foundation, Inc., to support the Educational Scholarship Program for Youth Affected by MS.

• $200 in unrestricted dollars from the Change a Life Foundation toward local Chapter programs and services. n

send a card & make a difference Tribute & Memorial gifts are an easy and thoughtful way to make a difference and show someone you care. When you make a donation you are not only moving us closer to a cure and improving the lives of people affected by this disease today, but we will also send a lovely, personalized card to the individual of your choice. To make a gift or to find out more about the Tributes & Memorials campaign please visit www.nationalMSsociety. org/calTM or call Danielle Katayama at 310.479.4456 ext. 66106.


Programs

Connection

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nationalmssociety.org/cal | 1-800-344-4867

living well with ms Living Well with MS is an extraordinary program that was originally designed to help those living with a recent diagnosis better understand multiple sclerosis and develop lifestyle strategies that can help diminish the effects of the disease. This 12-week online wellness class is now open to all who want to explore what they can do to positively impact their personal well-being. The Living Well Experience provides fun and interactive activities that let you try out new strategies while exploring topics like fatigue, stress management, employment & careers, relationships, and more! Discussions connect you with others – just like you – where you can share experiences and learn first hand from each other. Each week the class offers information that can help you: • Better manage MS and its symptoms • Develop healthy eating habits and understand the role nutrition plays in MS • Integrate a comprehensive approach to exercise into your personal fitness plan

kim, diagnosed in 1986

• Develop positive emotional and spiritual health practices to use across your lifetime Whether you’re newly diagnosed or have been living well with MS for several years, discover what you can do to enhance the manageability of your disease and integrate healthy lifestyle practices in your everyday life. Spring session begins online March 24, 2014! Pre-registration is required and the deadline to enroll is March 21, 2014.

Sign me up! 800.344.4867 www.LivingWellWithMS.com


14 FREE From falls Do you sometimes feel unsteady on your feet? Do you often use a wall or furniture to help you balance when you walk? Do you get nervous going down stairs? Have you had an unexpected trip or fall? Falls are quite common among people with MS. But there is something you can do to reduce your risk and prevent unnecessary injuries that can impact your well-being. This fun and interactive workshop will introduce Free From Falls, the Society’s fall prevention program designed specifically for people with MS who are able to walk, but may be at risk for falling. You will learn to: • Identify risk factors that can contribute to susceptibility of falling • Develop strategies you can use to prevent falls in your home and community • Practice 16 exercises that can improve balance, endurance, strength and mobility to reduce fall risk • Increase your confidence to manage and avoid falls

MS connection: Spring 2014

upcoming workshop locations The Wellness Center Los Angeles 1200 N. State Street Saturday, May 17, 10:30am - 2:30pm Palmdale Regional Medical Center Palmdale 38600 Medical Center Drive Saturday, March 29, 10:00am - 3:00pm Annenberg Center for Health Sciences Rancho Mirage 39000 Bob Hope Drive Friday, April 4, 10:00am - 2:00pm Renown Rehabilitation Hospital Reno 1495 Mill Street Saturday, April 5, 10:00am - 3:00pm Senior Select Advocate Apple Bear Center Victorville 19333 Bear Valley Road, Suite 103 Saturday, March 29, 9:00am - 1:00pm One-day workshops will also take place this spring in Bakersfield, Las Vegas, Santa Barbara and Visalia. Call 800-344-4867 for more information. Sign me up! 800-344-4867 www.nationalMSsociety.org/ CALcalendar


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dial, listen & learn Join us from the comfort of your own phone for one or more of these free conference call programs on a diverse range of topics. Preregistration is required for each program. Prior to the teleconference, you will receive a toll-free dial-in number. Sign me up! 800.344.4867 www.nationalMSsociety.org/CALcalendar

The Benefits of Realistic Optimism, with Catherine Freemire, LCSW

Tuesday, April 1, 12:00 – 1:00 pm

• Is your glass usually half-empty or half-full? • Where did you learn this outlook on life? • Has it changed over time or since you were diagnosed with MS? Studies show that “realistic optimism” leads to successful goal attainment, more satisfying relationships and better health, even when living with a chronic condition. This teleconference will provide tools to be more optimistic, even when facing negative experiences and challenges.

Bladder and Bowel Issues in MS

Thursday, April 3, 6:30 pm – 7:30 pm Join Pat Kennedy for an informative session on bladder and bowel issues in MS. You will: • Be aware of normal bowel and bladder function without MS. • Learn what dysfunction can occur related to MS. • Be able to explore these issues with your health care provider for solutions that will lessen the impact on your overall quality of life.

Value Based Living: Creating Your Life Path with Meaning, with Marisa T. Mazza, Psy.D

Tuesday, May 6, 12:00 – 1:00 pm

Chronic illness can keep us from living the life we want. During this teleconference we will explore important aspects of life and help you evaluate your path. Experiential and skill based exercises will be practiced.

Gratitude: How to Practice Thankfulness in Your Daily Life, with Catherine Freemire, LCSW

Tuesday, June 3, 12:00 – 1:00 pm

Practicing gratitude purposefully can bring positive emotions like joy and peace back into your life, especially when faced with the challenges of living with a chronic condition. In this workshop you will learn several ways to practice gratitude purposefully.


16 Financial Assistance We offer Direct Financial Assistance to people with MS and their families to help access needed services that are not available using other resources or insurance. The program is based on financial need and offers funding for the following services. Checks are made out and sent directly to the vendor. For more information, call 800.344.4867 or 310.479.4456.

MEDICAL CARE

MS Physician Consult program: Funding for one-time consult with an MS specialty neurologist. Must have limited geographic and/ or insurance resources. Physical/Occupational/Speech Therapy: Inhome evaluation and five to six follow-up visits for a person who cannot leave home. Individual counseling/telecounseling sessions: 6–10 visits per year with a licensed therapist who is experienced in MS.

MS connection: winter 2013/2014

SUPPORT SERVICES

Sherak Emergency Fund: Funding for unexpected one-time situations (food, rent, utilities). Official documentation demonstrating proof of emergency is required. Limit: up to $300 within an 18-month period. Durable Medical Equipment: Share of cost for durable medical equipment (wheelchairs, hand rails, etc.). Limit: up to $400/year. Rhoda Goetz Home Assistance Fund: Provided through a licensed home care agency for a person experiencing an exacerbation or post-hospital visit who does not have a caregiver. Limit: Up to 72 hours per year. Rhoda Goetz Personal Care Fund: • Beauty/Wellness: A fund to assist individuals who face barriers to maintaining healthy personal hygiene and care. Gain access to services such as hair, skin and nail care. Limit up to $120/year. • Chore Service Program: Light housekeeping only for those unable to manage these tasks. Limit: up to $300/year.

SUPPORT FOR FAMILY MEMBERS

Grisanti Respite Fund: Provided through a licensed home care agency for the family member who is a full-time care partner and needs time off. Limit: up to 50 hours/year. Supporting the Family: A fund to take care of special out-of-the ordinary family needs (i.e. school pictures, sports uniforms, etc.) Limit: up to $300/year.


nationalmssociety.org/cal | 1-800-344-4867

self help groups

Connect Community Self-Help Groups

Please contact the group’s facilitator(s) to learn more about a specific self-help group listed below,  or contact the Chapter at 800.344.4867.

at-home Telephone Group 3rd Wednesday, 1:00 pm Toll-free dial-in number: 1-888-279-3775, entry code 4001#

Los Angeles County Antelope Valley 3rd Thursday, 6:30 pm, Robertson Honda Call Missy 661.406.0741 Central LA 4th Saturday, 12:00 pm, Bilbrew Library Call Alva at 323.233.5413 Downey - MS Wellness Focus Thursdays, 10:00 am Rancho Los Amigos Rehabilitation Center Call Staci at 310.603.6853 or 310.918.8977 Downey - Young Professionals Group for people in 20s - 40s. 2nd Saturday, 10:00 am, Rancho Los Amigos Rehabilitation Center. Contact Sarah at 562.401.7622 or Beth at ypg@nmss.org Lakewood/Long Beach 3rd Sunday, 1:00 pm, May Boyer Park Call Fran at 562.925.4405

17 Los Angeles 3rd Thursday, 6:00 pm, Fairfax Branch Library Call Michael at 213.804.1249 or Allison at 323.876.7606 Monrovia/Pasadena 2nd Monday, 10:00 am, First Presbyterian Church Call Aynn at 626.303.4343 North Hollywood - Drumming Group Learn a unique way to express yourself. No musical experience needed. 2nd Saturday, 12:00 pm, Remo Drum Center. Call Beth at 818.219.1715 Santa Clarita  2nd Thursday, 6:30 pm, Saint Kateri Catholic Church. Call Eire at 661.297.6887 South Bay/Harbor City 3rd Thursday, 4:00 pm, Gardena Mayme Dear Library. Call Pattie at 310.769.0694  Tarzana/Northridge – Spanish Speaking Group 2nd Saturday, 9:00 am, Tarzana Community & Cultural Center. Call Maria at 818.370.8073 Tarzana – Let’s Play social group 3rd Saturday, 12:00 pm, Tarzana Community Center. Call Linda at 818.222.7678  West Covina  2nd & 4th Wednesdays, 11:00 am, Senior Center North Building. Call Tadd at 626.962.7909 West LA  Last Monday, 6:30 pm, Location TBD Contact Mary Ann at 310.479.4456 ext. 66121 West LA – Men’s Group  3rd Tuesday, 6:00 pm, Fraser Communications Call Larry at 310.926.1641


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MS connection: winter 2013/2014

Channel Islands

Inland Empire/Coachella Valley

Arroyo Grande 2nd Tuesday, 6:00 pm, United Methodist Church Call Ellen at 805.343.6094

Apple Valley/Victorville 1st Thursday, 10:00 am, Senior Select Advocate Apple Bear Center. Call Roseanne at 435.630.7572

Morro Bay  Last Saturday, 10:30 am, St. Peters by the Sea Church. Call Jeanette at 805.682.8783 ext. 68103 Ojai Valley Wallwalkers 2nd Thursday, 7:00 pm, Oak View Community Center. Call Tammy at 805.648.6402 Ojai Valley Wallwalkers Lunch Meeting 4th Tuesday, 12:30 pm, Eggs N Potatoes. Call Donna at 805.646.3750 or Tammy at 805.648.6402 Santa Barbara - MS Friendship Circle 3rd Wednesday, 11:30 am, National MS Society Call Francine at 805.682.8783 Santa Maria 3rd Saturday, 10:30 am, Café Noir Call Jeanette at 805.682.8783 ext. 68103

Hemet 2nd Friday, 10:00 am, Hemet Public Library Call Tammy at 909.792.6518 Lake Arrowhead 1st Friday, 4:00 pm, Location varies Call Joyce at 909.337.7573 Ontario 1st Saturday, 10:00 am, Redeemer Lutheran Christian Church. Call Emily at 909.851.6204 or Kathy at 909.621.3519 Palm Springs 2nd Sunday, 12:00 pm, Billy Reed’s Restaurant Contact Tony at 760.831.6365.

Simi Valley 1st Monday, 10:00 am, Cornerstone Church. Call Dennis at 805.584.2526 or Tina at 805.581.2264

Rancho Cucamonga - Moms with MS 2nd Tuesday, 12:00 pm, Rancho Cucamonga Resource Center. Call AnaMaria at 909.463.0334 or Kim at 909.904.0352

Thousand Oaks 2nd Monday, 9:30 am, Goebel Senior Adult Center Call Tina at 805.581.2264 or Ken at 818.518.4226

Rancho Mirage 2nd Thursday, 11:00 am, Buffalo Wild Wings Call Richard at 760.899.4174

Ventura Last Friday, 11:30 am, Carrow’s. Contact Vincy at 805.340.9627 or vincyntha@hotmail.com

Riverside 1st Saturday, 10:00 am, Tucker Medical Building Call Gilbert at 951.544.1441 or Katrina at 951.906.1752 Temecula 1st Monday, 10:00 am, Mary Phillips Senior Center. Call Denise at 909.519.4410, Tammy at 909.499.9012, or Jacqueline (Spanish-speaking) at 951.302.3529


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nationalmssociety.org/cal | 1-800-344-4867

Temecula - Men’s Group Last Wednesday, 1:00 pm, Location TBD Call Ric at 619.985.5736 Upland Last Wednesday, 10:00 am, Calvary Chapel Contact Tammy at 909.792.6518 or Denise at 909.519.4410. Yucaipa 3rd Tuesday, 2:00 pm, Good Shepherd Church Call Clare at 909.795.5128 or Tom at 909.795.1717

Nevada Las Vegas/Henderson - Oasis group 1st Saturday, 11:00 am. Call Ed at 702.271.3007 or Jerry at 702.285.6479 Las Vegas - MS Lunch Club 1st Tuesday, 11:30 am, Los Prados Country Club Call Darlene at 702.240.3210. Must RSVP and purchase lunch for $10/person Las Vegas - Westside Stories 3rd Wednesday, 6:00 pm, HealthSouth Call Darlene & Maria at 702.240.3210 Mesquite 1st Thursday, 10:00 am, Virgin Valley Home Care Call Erica at 702.346.7565 Reno/Sparks - “Live Life with Passion with MS” 4th Thursday, 5:30 pm, The Continuum-Reno 2nd Thursday, 5:30 pm, More To Life-Sparks Call Heidi at 775.240.1085 Reno/Sparks 3rd Thursday, 10:00 am Northern Nevada Center for Independent Living Call Mary at 775.772.3404

Truckee 2nd Thursday, 5:30 pm, Tahoe Forest Hospital Cafeteria. Call Rick at 530.550.0654 or BonniSu at 530.993.4499

San Joaquin Valley Bakersfield 1st Thursday, 7:00 pm, HealthSouth Rehab Hospital. Call JoAnn at 661,872.1973. Bakersfield - Breakfast & Lunch Groups 2nd Wednesday, noon or 4th Wednesday, 9:30 am Lorene’s Coffee Shop. Call Ron at 661.833.0388 or Sarah at 661.865.6238 Bishop 3rd Saturday, 10:00 am, Calvary Baptist Church Call Danice at 360.690.6012 or Brad at 360.690.5712 Clovis/Fresno 3rd Saturday, 9:30 am, San Joaquin Rehab Hospital. Call Yolanda at 559.908.4644 or Doris at 559.299.2072 Fresno – Spanish Speaking Group Call Sharon at 559.579.4096 for details. Hanford 1st Saturday, 10:00 am, First Christian Church Call Barbara at 559.584.1903 or Debra at 559.585.8054 Tehachapi 2nd Thursday, 5:00 pm, Tehachapi Moose Lodge Optional “Dinner on the Grill” $3.50 & up Call Linda at 661.822.7440 Visalia 2nd Saturday, 10:00 am, Kaweah Delta Rehab Call Fotini at 559.439.2154


5150 W. Goldleaf Circle, Suite 400 Los Angeles, CA 90056

Southern California & Nevada Chapter 5150 W. Goldleaf Circle Suite 400 Los Angeles, CA 90056 310.479.4456 800.344.4867

CALIFORNIA OFFICES Channel Islands

WE MOVED!

1921 State Street, Suite A Santa Barbara, CA 93101 805.682.8783

Inland Empire

3110 E. Guasti Road Suite 320 Ontario, CA 91761 909.949.1363

Kern County

1800 30th Street Suite 105 Bakersfield, CA 93301 661.321.9512

San Joaquin Valley

7472 N. Fresno St., #210 Fresno, CA 93720 559.439.2154

NEVADA OFFICES Northern Nevada

4600 Kietzke Ln., #K-225 Reno, NV 89502 775.329.7180

Southern Nevada

2110 East Flamingo, #214 Las Vegas, NV 89119 702.736.7272

MuckFest TM MS Los Angeles is a mucky romp through a 5K of mud & obstacles. Saturday, September 27, 2014 100% of the fundraising proceeds go to the National MS Society. Register Now at MuckFestMS.com.


MS Connection Spring 2014