national ms society, southern california & nevada chapter's spring 2013 issue of ms...

NationalMultiple SclerosisSocietySouthern California& Nevada Chapter

SPRING 2013 SoutheRN CalIfoRNIa & Nevada ChaPteR

MS CoNNeCtIoN NewSletteR

INSIde thIS ISSue

08lIvING wIth MS

03ReSeaRCh

11eveNtS

18PRoGRaMS CoNNeCtIoN

StoRy PaGe 14

eveRy CoNNeCtIoN CouNtS

02 MS connection: Spring 2013

letteR fRoM the PReSIdeNt

I aM aN MS aCtIvISt

On March 4 - 6, I will be joining National MS Society staff and volunteers for the 2013 Public Policy Conference in Washington, DC. As MS activists, we will advocate for:

• Funding for MS research, both at the National Institutes of Health (NIH) and in the Congressionally Directed Medical Research Programs (CDMRP): The CDMRP is a peer-reviewed program that funds high-risk, high-reward research, and is funded through the Department of Defense via the Defense Appropriations Act;

• Funding for the Food and Drug Administration due to the tremendous impact the FDA has on the development and availability of drugs and devices for individuals living with MS and other disabilities;

• Support of MS Awareness Week; and

• For Congress members to join the MS Caucus which raises awareness about MS on Capitol Hill and together, seeks creative federal policy solutions to the challenges facing people living with MS and their family caregivers.

I am honored to represent our local MS communities when visiting with Congress members and Senators, including several House Appropriations committee members, and new freshmen Congress members in both California and Nevada. But you don’t need to travel to Washington, DC, Sacaramento or Carson City to take action and shape health policies to benefit people living with MS.

Make youR voICe heaRdWhether you only have a few minutes or want to make a commitment, you can be an MS activist. Sign up to receive news and updates on health policies impacting people with MS and their families and take action on legislation that matters at www.nationalmssociety.org/MSActivist. Follow us on Twitter @MSActivist and on our blog at www.MSactivist.org to stay tuned for opportunities to weigh in with your legislators.

You can even use social media to become a powerful Digital Activist. Visit our site at www.nationalMSsociety.org and click Get Involved > MS Activist Toolkit > Digital Activism to learn how you can use Facebook and Twitter to educate your public officials and others about the best interests of people with MS and their families and help drive change. It really works! Members of Congress use social media to be more responsive to and have more meaningful interactions with their constituents. In fact, all 100 U.S. Senators are now tweeting, along with 90% (398 members) of the House of Representatives. n

03nationalmssociety.org/cal | 1-800-344-4867

An individual’s risk of developing MS increases several-fold if a close family member has MS. Researchers from the Harvard Medical School, Brigham and Women’s Hospital, and Partners Multiple Sclerosis Center are recruiting 5,000 people, 18 – 50 years old, who have at least one first-degree relative (parent, child or sibling) with a diagnosis of MS. The goal of the study is to identify the genetic, environmental and immune factors that may increase a person’s risk of developing MS. These findings may allow for earlier intervention to slow down MS or help to develop strategies for preventing the disease.

Participants can reside anywhere in the U.S. because no travel is required. For more information about this study, please contact the research coordinator Emily Owen at 617.264.5980 or [email protected]. n

ReSeaRCh

ReSeaRCheRS Need you! CoNNeCt wIth uS oNlINe:www.nationalmssociety.org/CAL

Like us: facebook.com/MSsoutherncal

Follow us: twitter.com/MSsoutherncal

Watch us: youtube.com/MSSoCalChapter

NatIoNal MultIPle SCleRoSIS SoCIetySouthern California & Nevada Chapter 2440 S. Sepulveda Blvd., Suite 115 Los Angeles, CA 90064 1-800-344-4867

Chair: Dina Tecimer Chapter President: Susan Bradley Editor: Marni Deckter

© 2013 National MS Society, Southern California & Nevada Chapter; Published Quarterly—Spring 2013

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.


ReSeaRCh

PRoGReSS oN MS theRaPIeSBY MEGAN WEIGEL, CNP, ARNP-C, MSCN

In 1993, Betaseron was released to market as the first disease-modifying therapy for multiple sclerosis. With the approval of oral teriflunomide (brand name Aubagio®) by the FDA in October, 2012, we now have nine disease-modifying therapies to treat relapsing forms of MS—and more on the horizon. The MS Emerging Therapies Collaborative, which includes the Society, provides downloadable information sheets at www.ms-coalition.org/emergingtherapies to facilitate communication between doctors and people with MS about newly approved treatments.

Research on potential treatments for progressive forms of MS is also underway and the International Progressive MS Collaborative, of which the Society is a member, plans to do all it can to speed the development of those treatments.

Here are the therapies to keep an eye on as we move forward into 2013.

BG-12 is an oral fumarate that has been used in Europe for over a decade to treat psoriasis. Although its exact mechanism of action is not known, it is thought to inhibit immune cells active in MS and may even be protective against

damage to the brain and spinal cord.

Two large phase III studies (the DEFINE trial and the CONFIRM trial, respectively) found that BG-12 significantly reduced relapses and disease activity as detected by MRI. The most common side effects were flushing of the skin and gastrointestinal upset. In 2012, Biogen Idec applied to the FDA for approval of BG-12 to treat relapsing MS, and the review process is now underway, with the FDA’s decision expected within the year.

Alemtuzumab, a monoclonal antibody that depletes circulating immune (T and B) cells thought to be responsible for MS attacks, would be administered by IV infusion for five days and then for three days one year later.

Genzyme applied to the FDA for approval of alemtuzumab to treat relapsing MS, based on positive results from several clinical trials, including one that showed a 55% decrease in relapses compared to interferon beta 1a (Rebif ); however, the FDA asked the company to resubmit its application, so a timeline has not yet been established. While this therapy is powerful against MS, there is concern

05nationalmssociety.org/cal | 1-800-344-4867

regarding adverse events, such as immune thrombocytopenic purpura (ITP, a bleeding disorder), and autoimmune thyroid disorders.

Laquinimod is a once-daily oral immune modulator that proved in phase III studies to statistically significantly decrease relapse rates, though not as robustly as investigators had hoped. This drug is about to be tested in another phase III study in 1,800 people with relapsing-remitting MS.

Daclizumab and ocrelizumab are two other monoclonal antibodies currently under study, with favorable results thus far. A highly concentrated liquid formulation of daclizumab is under study in relapsing-remitting MS. Experimental ocrelizumab, given intravenously, significantly reduced disease activity on MRI scans in a study of 218 people with relapsing-remitting MS. One person died due to brain edema; however, the relation of this death to the medication is unclear. Additional research, now going on in primary-progressive MS and relapsing-remitting MS, is needed to further determine ocrelizumab’s safety and benefits.

Clinical trials of treatments for progressive forms of MS are currently underway: these include natalizumab (Tysabri), fingolimod (Gilenya) and ocrelizumab.

MakING ChoICeSWhen we consider treatment now, in particular the possibility of switching therapies, we weigh the safety and efficacy of our older, injectable disease-modifying agents against the seeming convenience and perhaps superior efficacy of

newer agents. The sequencing of therapies is a new consideration, as well, as the effects of medications like natalizumab and fingolimod on the immune system may be prolonged. Questions about new therapies may mean longer or more frequent appointments with neurologists to discuss their risk-benefit ratios.

Additionally, people with MS may choose to see an MS specialist, or be referred to one by a general neurologist, for treatment recommendations.

However, the most encouraging part, in addition to the fact that treatments for MS may be getting more effective, of course, is that the research pipeline is full. Thanks to those who are committed to research funding, science is able to continue searching for the cure, and on that search, discover medications that will keep this disease as quiet as possible.

To follow progress on potential MS therapies, sign up for MS eNEWS at www.nationalMSsociety.org/signup, or visit www.nationalMSsociety.org/research. n

Megan Weigel is a Doctor of Nursing Practice and MS Certified Nurse who has been caring for people with MS for 12 years.


GIvING

GeNeRouS GRaNtoRSWe are grateful to the foundation and corporate supporters that contributed $286,300 in grant awards November 1, 2012–December 31, 2012:• $175,000 over two years from the Weingart

Foundation for core-operating support in Los Angeles, San Bernardino, Riverside, Santa Barbara, and Ventura Counties.

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

• $25,000 from The Wood-Claeyssens Foundation for the Better Living program in South Santa Barbara and Ventura Counties.

• $14,200 from the Change A Life Foundation for Free From Falls clinics and the specific need of an individual with MS.

• $14,100 from the Friends of the National Multiple Sclerosis Society for general operating support of the Northern Nevada Regional Office.

• $8,000 from the John and Maria Laffin Trust for the NOW MS research campaign.

• $7,500 from the Albert and Elaine Borchard Foundation, Inc. to support the Educational Scholarship Program for Youth Affected by MS.

• $4,000 from the Lockheed Martin AERO Club for the Relationships Matters program in the Inland Empire.

• $2,500 from Chevron for the 2013 MS Service Day Project in Kern County.

• $1,000 from the Carl E. Wynn Foundation for the Centers for Optimal Living with MS program initiative. n

what wIll youR leGaCy be?To help create a better future for the MS community through a charitable bequest is the ultimate expression of confidence in the National MS Society. Because all deferred gifts represent an expression of a lifetime commitment, there are no minimum gift levels. A bequest supports the Society into the future. What you put in your will is your legacy.

Just a few sentences in your will or trust are all that is needed. You can structure the bequest to leave a specific item or amount, make the gift contingent, or leave a percentage. You may restrict a bequest to research in a specific area, such as genetics or MS triggers; or it can be earmarked for services, such as emergency funds, scholarships or educational programs. You can also honor or memorialize someone special.

Please let us know you have made plans for such a gift. We would love the opportunity to thank you for your generous act. For more information, please call Diane Sant at 310.479.4456 ext. 66185.

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CReaM of the CRoP Volunteers are the lifeblood of our organization, and we are fortunate to have so many terrific volunteers donate their time, talents and expertise to support our mission. The following individuals and companies received the Chapter’s highest awards for their efforts in 2012.

Carlos Healey received the 2012 Volunteer of the Year award. Carlos has been volunteering twice a week for the last year to support our Chapter’s administrative needs. He is an anchor on our team of reception volunteers, answeringcalls and providing excellent customer service. Carlos also assisted with a high volume of data entry during our busy events. A member of The Marilyn Hilton MS Achievement Center at UCLA, Carlos and his wife Carmen also participate annually in Walk MS.

We awarded our 2012 Corporate Luminary Award to Halloween Adventure. Soon after participating in our Living Well with MS program, Julie Goldman contacted our Chapter about doing an in-store fundraising campaign during Halloween season. Julie and her husband Lenny, who is President and CEO

of Halloween Adventure, educated employees about the disease, asked customers to post Jack-o-Lantern pinups in their stores with what “MS equals to them” and solicited donations. In 2011, Halloween Adventure raised $30,000 in their 16 stores. But they didn’t stop there. In 2012, Halloween Adventure also started a Walk MS team in the Conejo Valley. Family, friends and store employees attended in costume, of course, and raised an additional $15,000. This past fall, Halloween Adventure’s in-store campaign raised $34,000 to support Walk MS as a Diamond Level sponsor. This year, their team will participate at the new San Fernando Valley Walk, and their fundraising goal is $25,000. We are extremely grateful to Julie and Lenny Goldman and their team at Halloween Adventure for raising much-needed awareness about MS and funds to support the Chapter.

The Sylvia Lawry Founder Award, named in memory of the Society’s founder, recognizes those who developed or implemented a new

Carlos Healey

Lenny & Julie Goldman (center) with teammates

continued on page 8

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lIvING wIth MS

IS It haRdeR to woRk wIth MS?JULIE STACHOWIAK, PhD

Many people with MS find it difficult to continue working, even in the early years of the disease. Tasks that seemed challenging before MS can feel insurmountable afterward. The fluctuation of daily symptoms and unknown levels of future disability make mapping out a strategic career path a challenge, to say the least. We simply do not know what the future holds around our ability to perform a job.

I am lucky enough to be able to work from home. I am able to work more when I feel good, less when I feel bad, and take a quick nap if needed. There are days when I can work a full day, but there are many days when I do not feel productive at all — when even looking at the computer screen feels like torture.

I know that as each year has gone on, the problems that I have had in trying to work efficiently seem to get worse. However, recent research indicates that some people who are newly diagnosed or have had an episode of a clinically isolated syndrome (CIS) may already need to adjust their time at work.

Researchers in the Netherlands wanted to look at how MS-related cognitive dysfunction affected work in people who are recently diagnosed with

MS CoNNeCtIoN: SPRING 2013

program or event. Stamoules Produce Company received this honor for forging a creative new partnership to raise MS awareness throughout North America in 2012 and funds for the cause. Stamoules donated a portion of the proceeds of Stamoules’ broccoli sales during the month of March. They also co-branded all of their broccoli boxes shipped to grocery stores with the National MS Society’s “We Joined the Movement” logo, and bundled their broccoli stems with an orange “MS –Join the Movement” rubber band. They even painted their delivery pallets orange, and added MS information in both English and Spanish to the paychecks of their more than 2000 employees during MS Awareness Week. They were so successful that they continued with their cantoloupe boxes and are back again with broccoli in 2013. Thank you to the very generous Stefanopoulos family and their team at Stamoules. n

continued from page 7

NatIoNalMSSoCIety.oRG/Cal | 1-800-344-4867

MS. In the Cognition and Socio-Economics (COGNISEC) study, the researchers studied 45 people who had been diagnosed with MS or had CIS within the past two years and have been on disease-modifying therapy for less than six months or not at all.

what they fouNd: n People with higher levels of fatigue and

disability all decreased their working hours within 12 months following diagnosis.

n Lower long-term memory scores correlated with a lower number of hours and days spent working during the week.

n People who scored lower on “focused attention” and “speed of memory” were more likely to say they “wished to work less.”

n Scores on tests assessing depression (Beck Depression Inventory) did not correlate at all with quantity of working hours.

While its findings need to be replicated in larger studies, so far this research shows that cognitive dysfunction can negatively impact the capacity to work, even in the very early stages of MS.

woRkING a balaNCeWhat does this mean? Let’s face it, even jobs that we love can lose some of their luster when we have to negotiate symptoms that add to our physical disability. While it is tempting to keep pushing ourselves to do more and overcome some of these challenges, it is important to remind ourselves that we may have very real cognitive symptoms related to our MS that are

impacting our abilities to work the same way we did in the past.

On the other hand, many people with MS continue working long after their diagnosis. Disease-modifying therapies, new technologies, better symptom management, legal employment protections and community resources can help you remain in the workforce — and education and preparation can be your most powerful tools for success. n

Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and www.ms.about.com.

toolS to woRkIf you’re struggling to keep up at work, but aren’t ready to throw in the towel just yet, visit www.nationalMSsociety.org/ employment or call us at 1.800.344.4867 to learn more about your options and get connected with employment resources in your area.

The Job Accommodation Network at www.askjan.org also offers information on a range of subjects for working people with disabilities.

Plus, join our free teleconference on Employment Myths and Reality: What’s the Reality When Working with a Disability on April 4 (see p. 19 for details).

09

10 MS CoNNeCtIoN: SPRING 2013

lIvING wIth MS

MSConneCtPonolar Collins was diagnosed with MS in 1990, although she began experiencing numbness and tingling in her fingers years before. She had worked as a Senior Collector at a bank until the symptoms worsened. Ponolar recalls the day when her arm went completely numb and, from that day forward, learned to adapt to the progression of this chronic, unpredictable and disabling disease.

After living independently for years, Ponolar knew she needed a higher level of care and physical therapy. In 2009, she came to Hillcrest Care Center, a skilled nursing facility in Long Beach, CA with over 50 residents with MS.

More than 18,000 people with MS reside in skilled nursing facilities across the U.S., and more than half are younger than age 65, with a substantial number in their thirties and forties.

As a partner in MS care, the Chapter has worked with Hillcrest to complement the Center’s provision of skilled care for MS residents with therapeutic exercise and a range of emotional, spiritual, intellectual and recreational activities. Recently, the Chapter also launched the

MSConnect Project, which aims to utilize ever-advancing tablet technology to transform isolation into connection for individuals like Ponolar.

Since the introduction of the MSConnect Project, Ponolar has learned to use an iPad to communicate with friends and family; to connect with the world by accessing current news and social networks; and to keep her mind stimulated with games and puzzles, including her favorite, Scrabble. The tablet’s usage of tapping and swiping movements is easier, for people like Ponolar with manual dexterity issues, to operate versus manipulating a standard computer keyboard or a mouse. The shorter learning curve of the tablet also makes this the device of choice, especially for those facing the cognitive challenges of attention and thought processing. n

Ponolar Collins

how CaN I helP?

• Donate your gently used tablet or iPad to the National MS Society.

• Purchase a tablet or iPad directly for the National MS Society.

• Donate any dollar amount to be used toward the purchase of a tablet by the National MS Society.

Contact Mary Ann Holm at 310.479.4456 ext. 66121 for details. Donated tablets will be distributed to people living with progressive MS in skilled nursing facilities in our local communities.


As a great personal challenge and achievement that any rider can experience, Bike MS is both a weekend-long and lifelong opportunity to make a difference in your own life, and in the world. Yes, it’s a physical challenge, but Bike MS is so much more. It’s a group effort that transcends personal accomplishment and makes a difference for over 19,000 individuals living with MS in our local communities.

Pedal along some of the most beautiful scenery in Southern California or Southern Nevada, while you enjoy a fully-supported and fun weekend. Enjoy delicious meals and strong support, with rest stops every 15 miles, bike mechanics and SAG vehicles. A fantastic festival awaits you on Saturday afternoon at each ride with great food, music, a beer garden and massage tent.

We’ll support you every mile of the way with training and fundraising tips. Register now for one of these unforgettable rides! n

bike MS: Coastal Challenge 2013October 12 - 13 >> Ventura, CA 30 - 160 miles >> www.bikeMSsocal.org bike MS: vegas Challenge 2013November 9 - 10 >> Las Vegas, NV 30 - 150 miles >> www.bikeMSnevada.org

CoNqueR the CouRSe


walk MS

together everyone AChieves MoreMario Stubbs, team captain of Walking Wolves, is gearing up for his second year at Walk MS: Las Vegas. The “Wolves” consist of 60 of Mario’s family members, friends and former classmates, who have provided a great support system for him. “Once they found out I had MS, they rallied around to support me. I want everybody to recognize what MS is all about and I want them to learn about it with me.”

Mario’s secret to recruitment is utilizing his network. Team members are constantly recruiting their friends and family to join the team and Facebook is their tool of choice to spread the word about Walk MS, invite people to join and ask for donations. “I have about 900 friends on Facebook and I tell them to sign up for my team if they’re going to participate or donate if they can’t.”

Mario also finds ways to fundraise by cooking dinners for local organizations in exchange for donations and selling team t-shirts. “I can’t wait for the Walk! As a matter of fact, I was just about to post on Facebook to see who else will be walking with me this year!”

walkING wolveS

be INSPIRed. Get CoNNeCted.Walk MS connects people living with MS and those who care about them. It is a day when we come together to show the power of our connections. Participating in Walk MS is more fun when you are part of a team! Share the experience of connecting with friends, family, co-workers, or anyone that wants to end MS forever. Teams grow through all kinds of connections. Ask people at your gym, members of your book club, friends at your place of worship, co-workers or neighbors.

Find a Walk and start fundraising today. Because the money we raise at Walk MS funds critical research to stop MS in its tracks, restore function that’s been lost and end MS forever. Donations also support programs and services, including direct financial assistance, wellness classes, counseling and support groups, and much more. n


04.07.13Greater LA Pasadena Rose Bowl

04.13.13 Desert Cities Palm Desert Civic Center Park

Fresno Woodward Park

Long Beach Belmont Pool

04.20.13 Inland Empire Citizens Business Bank Arena

Las Vegas Sunset Park

San Fernando Valley Woodley Park

San Luis Obispo Mission Plaza

04.27.13 Antelope Valley Lancaster Marketplace

Conejo Valley Conejo Creek Park

Santa Barbara Leadbetter Beach

05.04.13 Big Bear Alpine Pedal Path

Reno/Sparks Idlewild Park Terrace

09.21.13South Lake Tahoe Camp Richardson

10.26.13Bakersfield Yokuts Park

Register now, connect with others and start fundraising today. Visit

www.WalkToEndMS.org to get started.

the fIRSt StePTwenty-five years ago, people living with MS and those who cared about them decided to take their first steps—literally—toward joining the movement to end multiple sclerosis, walking from downtown Minneapolis to the state capitol in St. Paul in the first Walk MS event. They raised $216,000 toward research and service programs for people with MS. The idea quickly spread, with Walk MS events taking place in more cities across the nation the very next year. Today, Walk MS events raise $50 million a year, with more than 330,000 people participating nationwide.

thaNk you to ouR 2013 PaRtNeRS


MS awaReNeSS week

eveRy CoNNeCtIoN CouNtSMS Awareness Week, March 11 - 17, 2013, is a time for people affected by MS to connect with others, share knowledge and take action to increase awareness about the disease. Your voice and the connections you create will make the movement even more powerful.

Get CoNNeCted• Why do you connect? Starting March 7,

visit MSconnection.org to share your story and read others in our 3D connections gallery. This highly interactive site will offer ways to easily raise MS awareness among your social networks.

• In support of MS Awareness Week 2013, the LA Clippers have once again joined the movement to end MS. Buy your tickets today for MS Awareness Night at the Staples Center on March 13 vs. the Memphis Grizzlies or March 17 vs. the NY Knicks. Discounted tickets include

ChalleNGe walk MS

a CoMMuNIty of SPIRIt & StReNGth

3 Days. 50 Miles.

Carlsbad to San Diego September 27 - 29, 2013

Challenge Walk MS is the perfect way to connect with others in our community who are passionate about ending MS. It’s a personal challenge of spirit and strength that brings people together who want to make a big difference in the lives of people with MS. Challenge Walk MS will be the most rewarding journey you’ll ever make.During this all-inclusive weekend, we will walk together for three days and 50 miles along a beautiful Southern California coastline route to make a powerful statement, and to keep moving toward a cure for multiple sclerosis.

Register now and start fundraising today:www.myMSchallenge.com

or call 800.344.4867

Be there. Because every connection you make and every dollar you raise supports the mission to create a world free of MS. n


a commemorative T-shirt and proceeds will benefit the Chapter. www.clippers.com/msawareness

• Register a team for Walk MS, Bike MS or Challenge Walk MS. Or use this week to jumpstart your fundraising efforts.

• Eat broccoli! For the second year, a portion of the proceeds of Stamoules Produce Company’s broccoli sales during the month of March will support Walk MS. Stamoules is also helping to raise MS awareness throughout North America by co-branding all of their broccoli boxes shipped to grocery stores with the National MS Society’s “We Joined the Movement” logo, and bundling their broccoli stems with an orange “MS – We Joined the Movement” rubber band.

• Raise MS aWEARness by wearing orange or past event T’s or jerseys throughout the week. It can be a great conversation starter.

• Spread the word with digital downloads. Visit MSconnection.org to find facebook cover photos, an IM icon for instant messaging, and banners for your email signature or your website. Share the video MS Impacts Us All.

• Volunteer for MS Service Day. A team of local volunteers, with the help of funding by Chevron, will lead the Chapter’s 4th annual

MS Service Day on Saturday, March 16 by visiting the homes of people living with MS in Kern County to complete projects indoors and outdoors. Past projects include yard work, painting, cleaning and small home repairs/modifications. If you would like to volunteer, please call 661.321.9512.

• Join an MS Awareness Week event in your neighborhood. Find fun activities, educational programs and fundraisers at nationalMSsociety.org/cal, including:

• Raise a glass! Join wine tasting parties at Taste of Hope in Bakersfield or Fresno or L’uva Bella Winery in Reno.

• Dine out! Select Rubio’s locations will be spreading awareness by displaying Walk MS posters and hosting give-back fundraising nights in their restaurants. Or let Rubio’s help you set up a fundraiser for your own team (during MS Awareness Week or anytime during the year). Visit www.rubios.com to find your local store and learn more. Several other restaurants in our Chapter area will also host give-back nights, including O’s American Kitchen in Palm Desert and Pismo’s Coastal Grill in Fresno.

• Or host your own event. Do It Yourself Fundraising is a chance for people to raise awareness and critical funds for the MS movement in new and creative ways. Visit DoItYourselfMS.org or call Debra Gruen at 310.479.4456 to get started today. n


Thanks to the generosity of the following donors, more

than $1,470,000 was contributed to Golden Circle during the 2012

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

SPoNSoR ($10,000 - $49,999)Anonymous(2)•JenniferBerkley&AlanJones,InHonorofDr.NancySicotte•JohnA.Duran,JohnAmadoDuran&AustinRyanFuentes•ElerdingFamilyFoundation•FloraL.ThorntonFoundation •Deanne& JoelP.Fried •TheRhodaGoetz Foundation, Inc.,KevinGoetz • Shirley&BurtHarrisFamilyFoundation•PhilipHohnsteinFamilyFoundation • JulieKaufer&FrankReddick • Pamela&StanleyE.Maron•EugeniaRiordanMulé•MSCharityBridgeTournament•Delia&MarthaPazos•Jerome&FaithPearlmanFoundation,FaithPearlman•PhiAlphaKappaSorority•KarenRitchie•Susan&CarlRobertson•ConradSchlum Charitable Trust, Joan & Arnold Seidel • DinaTecimer&MasoodSohaili•Janice&TimurTecimer•TheSusanne&GaryTobeyFamilyFoundation•TheWarren/Soden/Hopkins Family Foundation, Anna Marie & Bob Warren•StephenB.Yoken•EllaZarky

fRIeNd ($5,000 - $9,999)Anonymous(3)•ClaudiaBarski&PeterCarian•Elaine&JohnV.Bock,Jr.•TheCorgelFamily•SamuelDeLuca•DreamCruiseCar Show,Teri&LucyBeardsley • Julie&BarryEngelman • Debbie Goldman& BobHarper •MelanieGrisanti & Gordon McLeod • Charlotte Jacobs & Dr.S. Lawrence Jacobs • Tatiana & Todd James • Jaquish& Kenninger Foundation • Marca & Al KauferFoundation, Marca Kaufer • Dr. Teri Lissy • Jacqueline& Paul Mahoney • Ronald L. Olson Foundation, Joan& Ronald Olson • Fern & Bob Seizer • The SkynyrdFoundation•LouiseLarawayTealFoundation•Linda&Dennis Vaughn • Anne& LarryWayne • Gail & ChrisWilliamson • Barbara Wilson & John Phillips • AnneWoodyard

leadeR ($2,500 - $4,999)Anonymous (2) • Emily& K. Zachary Abbott • JoanneBeckwith • Vicki & Robert Bond • Barbara & MortonBowman • Kappy Bristol & James D. Bristol • Pearl &MelvinBrooks • Lynn&BradleyCaliff • BuchananMSBowl•Stacie&PhilipD.D’Amour•Sandra&BernardFischbach • AnitaDe Frantz •DonnaGarber • Elvie&Yale Gieszl • Sam & Rena Given Foundation, Cristine& David Card • Ann & David Gooding • Sherri &Gary Haber • Dr. Alex Krammer • Don C. & DianeS. Lake Family • Sharon & Hal Lampert • MichaelJ. Lichner • Cynthia & Michael Malone • GenevaMcCaron • Christine & Richard Newman • Julie &JamesD.Power, IV •RicRobertson • Janice&StephenSacks•Nancy&MarkSamuels•IreneV.Steinman•Evelyn&JeffreyTolin•HappyWalters•VeronaE.Weeks•Diana& ChesterWidom • Howard Yamada • Annette & GilYanuck •Whitney Young Children’s Foundation • GaryYoungberg

MeMbeR ($1,000 - $2,499)Anonymous(5)•Jeanette&CharlesAeschbacher•AgarwalFamily Foundation, Avadhesh Agarwal • Randi Burke-Aguiar&JamesAguiar•Fotini&SteveAlfieris•MauriceAmado Foundation • Mindy Amster Beechen • RobertArnold•JeffBader•TerryBass•LewisBlack•NicholasBruyer • Julia & James Burge • Debbie & JamesBurrows•Barbara&Dr.GeorgeM.Byrne•EileenT.&GaryO.Caris•Sherie&StephenCarroll•Laurel&AaronClark•HeatherCoombs•Toni&BruceCorwin•ColonelJohn S. Costello • Edward Court • Kate Crane •

ChalleNGe aCCePted. ChalleNGe Met.

The 2012 Golden Circle Year End Challenge was a tremendous success!

We are thrilled to announce that, for the 5th 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 $665,000 via gifts of stock, personal checks, credit cards and cash between 10/1/2012 and 12/31/2012. As a result, the Golden Circle campaign raised more than $1.47 million in 2012! 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 continued support and leadership.

If you are interested in learning more about Golden Circle, please call Elicia Lopez at 310.479.4456 ext. 66111.

17BenjaminA.Dent•JanetDirks•Shelly&JoeDrnek•GaryEast • Betty Filippin • Joseph Fischer • Gloria & StanleyFishfader•Eileen&DonFracchia•BrianFuis•MargaretL.Gage•Donna&JamesGallagher•FrankGarritano•MargieGladden•CynthiaGlazar&MarkCendrowski•Judy&DavidGoldstein•WilliamHammond•Eleanor&JackHarter•Arlene& Richard Havel • Beatrice & Michael Hencel • JeffreyHess • Betty Hoover • Hospice Care of California • Linda& Roger Howard • Susan M. Howard • Denise & PaulHuether • The G & E Jennings Foundation • Charlotte &StanleyKandel•Karen&DonaldKarl•K.L.Keltner•RobertaKirkhart•RussellKnelpp•Kimberly&MichaelKotrla•Kay&JohnKrattli•Pauline&SamuelLi•CeliaLight•LynchFamilyCharitableFund•PeterMaller•Betsy&BobManger•BenjaminMatthews • Amy & Michael Mayfield • Tzviah Mayman • Dr. Cynthia McGranahan & Lyle Dawn • Sue & EdMeltzer•IreneMendon•KevinMichel•DavidMilam•SherylMiller & Dr. Robert Schilling • DeborahMlynarski • DaveMustain • Helena & Richard Neidorf • Claudette Nevins&BenjaminPick •BarbaraA.&PaulT.Norton •OarsmenFoundation,Dee&George Schuler • JanetOffel&MichaelNebenzahl • Pam Offsay • Oremor Management &Investment Co. • Nancy & Jason Patterson • Gail & HaimPekelis • Sean Perrin • Jeff Peterson • Kimberly Phillips &RossSkinner•JacquelinePiatigorsky•JosephPretlow•Allane& Jeffrey Quirk • Karen Randall &HenryHines • Fred R.Salisbury•Kay&Dr.LorenSanchez•EduardSarkisov•Jane&Charles Schneider • Susan Schroeder • Priscilla&HaroldSchroeder•Nancy&NormanSloan•BrianSharp•DeborahShaw•Judy&DavidShore•RobertSiegel•Judith&EugeneSiegel • Susi Silverman • Strawn Rosenthal • Jessie AnneTait•ThetaChiEpsilonSorority•ThetaChiEpsilon,LambdaChapter•GailThomason•Jayne&KellyTien•CynthiaTorres&MichaelGisser•CharlotteTurhollow•JamesS.Tyre•Lorna&Dr.ShelbyWagner•WatermanFamilyFoundation,SeymourWaterman•TerryWeeks•Melissa&RobertWeiler•SusanK.&WilliamM.Weintraub•AndyWexler•JoyceWhite•Mary&RichardWhiting •Diana&ChesterWidom •WilburC.Grosse Trust, Maria Elena Muñoz • Susan H. & Philip T.Winik•Martha&CharlesWolf•Dr.MylesJ.Zakheim

We also gratefully acknowledge all of the donors who contributed nearly $70,000 to the 2012

Golden Circle with gifts up to $999—Thank You!


PRoGRaMS CoNN

eCtIo

N

IMPRovING aCCeSS to MS CaRe We are conducting a brief survey of people living with MS across our Chapter about their access to MS-related health care and the doctors they see. With your help, we hope to gain a better understanding of the issues that exist in our communities and to help the MS Society provide information about services and treatment advances to health care providers there. Your responses will be kept in the strictest of confidence.

Your input is essential to this process. If you have MS, please complete our Access to MS Care Survey at www.nationalMSsociety.org/CALaccess.

take Me out to the ballGaMe Thanks to trustee Dave Perren for once again very generously donating seats for the 2013 Dodgers season. We have one pair of tickets available for each home game. Tickets will be distributed on a first come, first served basis with a maximum of one pair of tickets per household.

To request your free, accessible tickets, contact Betty Ionescu with your top six game choices and your home address at [email protected] or 310.479.4456 ext. 66123. Visit www.dodgers.com to find a complete game schedule.


19

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. Pre-registration 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

eMPloyMeNt & MS Employment Myths and Reality: What’s the Reality When Working with a Disability Thursday, April 4, 6:30 – 7:30 pm

What happens to my employment options when my condition worsens and what will it mean to my health care benefits? Joe Entwisle, MS, CLCP, a Senior Policy Analyst for the National Consortium for Health Systems Development, will lead an informative discussion on the impact of employment on benefit systems, and the realities when it comes to working with a disability.

eMotIoNal wellNeSSLife Coach and Psychotherapist Catherine Freemire, LCSW, leads discussions on a new topic each month.

Self-Compassion Tuesday, March 19, 12:00 – 1:00 pm

Learn why self-compassion is a necessary tool for life in today’s world and why it is especially important for people with a chronic illness.

New Year’s Resolutions Revisited Tuesday, April 2, 2:00 – 3:00 pm or Tuesday, April 16, 12:00 – 1:00 pm

Did you make any resolutions in January or create new goals for 2013? Did you know that only 8% of people actually follow through with their resolutions? Learn how to create doable resolutions and how to increase the chances that you will follow through.

Practicing Ways to Increase Our Joy Tuesday, May 7, 2:00 – 3:00 pm or Tuesday, May 21, 12:00 – 1:00 pm

Learn ways to increase and enhance our joy through the lense of the Past, Present and Future, as well as concrete strategies that help to enliven us by deepening our experiences of joyful times already lived or yet to come.

Dealing with MS Socially Tuesday, June 4, 2:00 – 3:00 pm or Tuesday, June 11, 12:00 – 1:00 pm

Tired of trying to explain MS symptoms to people? Think people doubt you or blame you for the condition? Have friends become less sensitive to the MS since you were diagnosed? Do you feel embarrassed by the symptoms? Are you isolating yourself or have friends stopped calling? Get tips on how to handle these issues.



fINaNCIal aSSIStaNCeWe 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 CaReMS 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: In-home 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.

SuPPoRt SeRvICeSSherak 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 MeMbeRSGrisanti 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.


Self helP GRouPS

CoNNeCtCommunity Self-Help GroupsPlease 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 GRouP3rd Wednesday, 1:00 pm Toll-free dial-in number: 1-888-346-3659, entry code 2713#

loS aNGeleS CouNty Antelope Valley 3rd Thursday, 6:30 pm, Robertson Honda Call Missy 661.406.0741

Burbank 4th Wednesday, 3:00 pm Call Nan at 818.762.5432

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 their 20s & 30s. Friends & family welcome. 2nd Saturday, 10:00 am Rancho Los Amigos Rehabilitation Center Contact Sarah at 562.401.7622 or Beth at [email protected]

21GLAMS (Gay and Lesbian Support Group) 3rd Saturday, 1:00 pm, Location varies Contact Ronni at 626.392.4321 or [email protected]

Lakewood/Long Beach 3rd Sunday, 1:00 pm, Lakewood Youth Center Contact Fran at 562.925.4405 or [email protected]

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, 3:00 pm, Remo Drum Center. Call Beth at 818.219.1715

Northridge – Spanish Speaking Group 2nd Saturday, 10:00 am, Child & Family Guidance Center. Contact Maria at 818.370.8073 or [email protected]

Santa Clarita 2nd Thursday, 6:30 pm, Blessed Kateri Catholic Church. Call Eires at 661.2297.6887

South Bay/Harbor City 3rd Thursday, 4:00pm Gardena Mayme Dear Library Call Pattie at 310.769.0694

Tarzana – Let’s Play social group 1st Saturday, 12:00 pm, Tarzana Community Center. Call Linda at 818.222.7678 or [email protected]

22Santa Maria 3rdSaturday,10:30am,CaféNoir Call Devin at 805.772.2046

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

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

Ventura Last Friday, 11:30 am, Carrow’s. Call Vincy at 805.340.9627 or [email protected]

INlaNd eMPIRe/CoaChella valleyLake 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 Desert 2nd Wednesday, 6:00 pm, Olive Garden Contact Maria at [email protected] or Rebecca at 760.340.0651.

Palm Desert 2nd Thursday, 12:00 pm, Pizza Hut Call Richard at 760.899.4174

Rancho Cucamonga - Moms with MS 3rd Tuesday, 12:00 pm, Rancho Cucamonga Resource Center. Call AnaMaria at 909.463.0334 or Kim at 909.904.0352

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, National MS Society Contact Nancy at 310.827.5714

West LA – Men’s Group 3rd Tuesday, 6:00 pm, National MS Society Call Larry at 310.926.1641

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

Lompoc 1st Saturday every other month Veteran’s Memorial Building Call Devin at 805.772.2046 for details

Morro Bay Last Saturday, 10:30 am, St. Peters by the Sea Church. Call Devin at 805.772.2046.

Ojai 2nd Thursday, 7:00 pm, Oak View Community Center. Call Tammy at 805.648.6402

Ojai – Lunch meeting 4th Tuesday, 12:30 pm, Eggs N Potatoes Call Donna at 805.646.3750 or Tammy at 805.648.6402

San Luis Obispo - Community Circle Fridays, 10:00 am, First Presbyterian Church Includes adaptive exercises, wellness workshops and more. Call Devin at 805.772.2046

Santa Barbara - MS Friendship Circle 3rd Wednesday, 11:30 am, National MS Society Call Francine at 805.682.8783

MS CoNNeCtIoN: SPRING 2013

23Riverside 1st Saturday, 10:00 am, Tucker Medical Building Call Gilbert at 951.544.1441 or Katrina at 951.906.1752

Temecula 1st Wednesday, 10:00 am, Trinity Lutheran Church Call Denise at 909.519.4410 or Tammy at 909.792.6518

Upland Last Wednesday, 10:00 am, Calvary Chapel Call 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

NevadaLas 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 Contact Darlene at 702.240.3210 or [email protected] Must RSVP and purchase lunch for $10/person

Mesquite 1st Thursday, 10:00 am, Virgin Valley Home Care Call Erica at 702.346.7565

Reno/Sparks ”Live Life with Passion with MS” group 4th Thursday, 5:30pm, The Continuum-Reno 2nd Thursday, 5:30pm, More To Life-Sparks Call Heidi at 775.240.1085

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

SaN JoaquIN valleyBakersfield 1st Thursday, 7:00 pm, HealthSouth Rehab Hospital. Robert at 661.587.1445

Bakersfield 2nd Wednesday, noon or 4th Wednesday, 9:00 am Lorene’s Coffee Shop. Call Mary at 661.368.2910, Mike at 661.340.3455 or Sarah at 661.865.6238

Bakersfield - Family Support Group 4th Saturday, 10:00 am, National MS Society Call Kim at 661.321.9512

Clovis/Fresno 3rd Saturday, 9:30 am, San Joaquin Rehab Hospital Call Yolanda at 559.908.4644 or Doris at 559.299.2072

Hanford 1st Saturday, 10:00 am, First Christian Church Call Barbara at 559.584.1903 or Debra at 559.585.8054

Tehachapi 2nd Monday, 4:00 pm, Tehachapi Moose Lodge Call Linda at 661.822.7440

Visalia 2nd Saturday, 10:00 am, Kaweah Delta Rehab Call Sandra at 759.759.5867


2440 S. Sepulveda Blvd., Suite 115 Los Angeles, CA 90064

register todayWalktoendMs.org 1.800.344.4867

Walking for Jillian, diagnosed in 2009

Southern California & Nevada Chapter 2440 S. Sepulveda Blvd., #115 Los Angeles, CA 90064 310.479.4456 800.344.4867

CALIFORNIA OFFICES

Channel Islands 14 West Valerio Street Santa Barbara, CA 93101 805.682.8783 San Luis Obispo 805.772.2046

Coachella Valley 73-710 Fred Waring Dr., #103 Palm Desert, CA 92260 760.776.5740

Inland Empire 3110 E. Guasti Road, #320Ontario, CA 91761909.949.1363

Kern County 1800 30th Street, #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, #214Las Vegas, NV 89119 702.736.1478

national ms society, southern california & nevada chapter's spring 2013 issue of ms...

Documents

ms research

ms caucus

ms activiston

ms activists

local ms communities

national ms society

members of congress

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