National MS Society, Southern California & Nevada Chapter's Winter 2012/2013 issue of MS Connection

NationalMultiple SclerosisSocietySouthern California& Nevada Chapter

winter 2012/2013 Southern California & nevada Chapter

MS ConneCtion newSletter

inSide thiS iSSue

07volunteerS

04reSearCh

08eventS

17prograMS ConneCtion

bike MS raiSeS over $1.26 Million for MS reSearCh & prograMS

Story page 12

02 MS connection: winter 2012/2013

As I look back on 2012, I’m so proud of what we — our countless volunteers, fundrais-ers, activists, donors and staff — have been able to accom-plish to support people liv-ing with MS and their loved ones. Here are just a few of the

many highlights of the last year:

Through programs & services, we helped… •4,519 callers navigate the challenges of life

with MS, connecting them to information and valuable community resources.

•1,054 people better understand amyriad oftopics from treating MS and its symptoms to employment and legal issues through in-per-son, online and teleconference classes.

•1,049peoplewithMStofindthemedicalcarethey needed, partnering with leading centers for MS care by providing case management, medical interpretation services, rehabilitation sessions and physician consultations.

•Over 650 people cope with the emotionalchallenges MS can bring through one-on-one peer support, community-based groups and professional counseling services.

•500 people with over $270,000 in direct financialassistance.

Research advances… •In September, the FDA approved teriflu-

nomide once-daily pills (Aubagio®) to treat relapsing forms of MS. This is now the 2nd oral therapy, and there are currently another half dozen potential treatments in late stage devel-opmentoralreadybeforetheFDAforreview.

Thanks to the work of MS activists… •Medicarewill no longer deny services to its

beneficiaries who are unable to show thatthey are improving from certain skilled care services, including therapy (more on page 6).

•Nevadawasoneof10statestoreceiveafederalLifespan Respite grant to enhance statewide systems that coordinate and increase family caregivers’ access to respite services.

•The House of Representatives passed its funding bill for theDepartment ofDefenseforfiscalyear2013,whichincluded$5MforMS research.

Fundraising successes… •Walk MS raised $2.5 million, and Wells

Fargo donated our largestWalk sponsorship ever of $55K.

•Bike MS Coastal Challenge and Vegas Challenge crossed its $1.25 million goal.

•The Dinner of Champions raised $2.1M, bringing the total Dinner fundraising under Tom Sherak’s 20-year tenure to $47 million!

•The Kenrose Kitchen Table Foundation and the Steve and Caroline Kaufer Family posed a $550,000 Challenge for this year’s Golden Circle campaign to help us raise at least $1.1 million in year-end giving.

•We had our largest foundation gift ever from the Conrad N. Hilton Foundation for $1.245 million to support MS research.

THANK YOU to everyone who joined the movement to create a world free of MS in 2012. Whether you participated in a program or event, donated, signed up as an MS activist or raised MS awareness – you made a difference. n

letter froM the preSident

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

The Kenrose KitchenTable Foundation andtheSteveandCarolineKauferFamilytogetherhave posed a $550,000 Challenge for thisyear’s Golden Circle campaign. If Golden Circle donors contribute a total of $550,000byDecember31,2012,thecampaignwillbeensuredanaggregateofatleast$1,100,000!

All Golden Circle gifts contributed October 1 – December 31, 2012 will count toward the $1.1 million Challenge.

Your contribution will fund research and help people living with MS. Please make your gift today and help the Chapter move closer toward a world free of MS.

Every donation will count, regardless of restriction or giving level.

There has never been a more promising time to maximize the power of your gift.

$1.1 Million Challenge for golden CirCle

national Multiple SCleroSiS SoCietySouthern California & Nevada Chapter 2440S.SepulvedaBlvd.,Suite115 LosAngeles,CA90064 1-800-344-4867

Chair: Dina Tecimer Chapter President:SusanBradley Editor: MarniDeckter Design: Sabrina Toston

©2012NationalMSSociety, SouthernCalifornia&NevadaChapter; PublishedQuarterly—Winter2012/2013

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 Societyrecommends 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.

ConneCt with uS online:www.nationalmssociety.org/CAL

Like us: facebook.com/MSsoutherncal

Followus: twitter.com/MSsoutherncal

Watchus: youtube.com/MSSoCalChapter


reSearCh

partnering on progreSSive MS Treatments for relapsing-remitting multiple sclerosis have moved forward, but treatments for progressive MS have remained maddeningly elusive. A newly formed International Progres-sive MS Collaborative intendstofindoutwhy.

Afar-rangingcollaborationbetweentheNational MS Societies of the U.S., Canada, Italy, the NetherlandsandtheUnitedKingdom,andtheMultiple Sclerosis International Federation, its mission is to speed the development of effective therapies for progressive forms ofMS. “Over-coming the challenges of progressive MS is a key objective of the Society’s Strategic Response toMS,”saidTimothyCoetzee,PhD,chiefre-search officer of the Society. “This is just one of the ways we’re collaborating worldwide to speed clinical trials in progressive MS.”

Thecollaborative’sfirst stepwas topublish anopinion paper in Multiple Sclerosis Journal that outlined the challenges in developing therapies forprogressiveMS.Itidentifiedfivekeyresearchpriorities, as follows:

01 Experimental models of MS. Animal mod-els thatmore closely reflect the symptomsand underlying tissue damage of progressive MS are urgently needed.

02 Identification and validation of targets and repurposing opportunities. Advances in MS

genetics and the systematic re-evaluation of drugs approved for other indications may help identify new therapeutic targets in progressive MS.

03 Proof-of-concept clinical trial strategies. Lesion activity on MRI is an accepted biomarker in clinical trials for relapsing- remitting MS, but no comparable measure has been identified for progressive MS —yet.

04 Clinical outcome measures. Establishing clearer outcome measures for progressive MS will help evaluate possible therapies.

05 Symptom management therapies and reha-bilitation strategies. Developing symptommanagement therapies and rehabilitation strategies in progressive MS may be advanced by targeted research and assessing potential treatments in rigorous, well-designed trials.

The collaborative has convened five working groups to discuss these challenges and opportu-nities and to make research recommendations in each of the key areas. “Tackling these issues will require an integrated, multidisciplinary approach to enable effective translation of research into therapies,” wrote the authors of the paper. [To read the paper in full, go to tinyurl.com/ bdjv5ak.]

The collaborative will host an international conference in 2013 to plan how to continuemoving research forward. Visit www.national MSsociety.org/progressiveMS for more infor-mation on progressive MS, or sign up for MS eNEWSatwww.nationalMSsociety.org/signup for the latest on the collaborative’s progress. n


Nearly 7,000 investigators convened in Lyon,France this fall at the world’s largest meetingdedicated to MS research. Among the more than1250scientificpresentationswerethelatestresults from trials of emerging therapies, possible risk factors, rehabilitation, CCSVI and much more. Here are just a few highlights:

Stopping:•Statin for secondary-progressive MS: Dr. Jeremy Chataway (University CollegeLondon) presented first results from a phaseII, two-year study of high-dose simvastatin (atherapyforhighcholesterol)involving140people with secondary-progressive MS. Those who took 80mg of simvastatin, versus those who took placebo, showed nearly 40% lessbrain volume reduction (atrophy), and also had slower clinical progression.

•BG-12: Combined results of two phase III, 2-year studies of oral BG-12, this potentialtherapy for relapsing-remitting MS (RRMS)providessubstantialbenefits,includinga49%reductionofrelapsesand30–32%reductionofthe risk of progression, compared to placebo.

•Gender differences:TheMSBaseisaworld-wide online registry that tracks people with MS. The international team reported, based on an evaluation of 16,633 patients in the registry, that males with RRMS begin at the same level of symptoms as females, but develop more severe disease and move more quickly to the secondary-progressive phase. In those with

primary-progressive MS, males and females tend to progress at equal rates.

Restoring Function: •Factors in MS damage and recovery: Dr.

Richard Ransohoff (Cleveland Clinic) described cells called macrophages that are key players in causing nervous system damage and clearing it up to permit tissue repair. Some are derived from cells within the brain and some enter from thebloodstream;each has different roles. This work is shedding important light on new strategies to treat MS.

• “On” switch for myelin-making cells?: Society grantee Dr. Gareth John (Mt. SinaiSchool of Medicine) and collaborators de-scribed studies that led to the discovery of a molecular switch, calledKLF6, that controls whether myelin-making cells either mature or die, suggesting it could be a potential target to promote myelin formation and repair.

Ending MS• Lifestyle Risk/Protective Factors: Dr. L.

Alfredsson (Karolinska Institute, Stockholm) and colleagues reported that being overweight before age 20 is associated with increased risk for developing MS. The investigators speculate that controlling obesity in teens may reduce the incidence of MS. This team also reported that eatingfattyfish,withrelativelyhighvitaminDcontent, one to seven times per week slightly lowers the risk of developing MS, especially for those who receive low sunlight exposure.

Visit nationalMSsociety.org/news to learn more about these and other studies presented at the GlobalMSResearchMeetinginOctober.n

STOPPING THE DISEASE RESTORING WHAT’S BEEN LOST ENDING MS FOREVER


advoCaCy

viCtory in MediCare SettleMentByMARCELLADURAND

For years, Medicare’s so-called “ImprovementStandard” denied coverage of certain treat-ment services to people with multiple sclero-sis andotherdiseases.However, inOctober, asettlement to end the standard was reached in a nationwide lawsuit inwhich theNationalMSSociety was a plaintiff. The Society joined other national organizations including the Parkinson’s Action Network, the Alzheimer’s Association,United Cerebral Palsy and Paralyzed Veterans of America in a class-action suit to challenge the Centers for Medicare and Medicaid Services (CMS) over the standard.

The standard denied Medicare coverage for ser-vices such as skilled nursing facilities, home health andoutpatienttherapybenefitslikephysicaloroccupational therapy toMedicare beneficiariesliving with MS if they did not show improve-ment. However, these often-expensive services can be critical to prevent decline or maximize independence. The standard actually violated Medicare’s own official regulations, which state that “the restoration potential of a patient is not the deciding factor” for coverage. The agreement

to end the standard will vastly benefit peoplewith MS and their families, helping place essen-tial services back in their reach.

OncethesettlementisapprovedbyChiefJudgeChristina Reiss of the U.S. District Court inVermont, where the suit was filed, the stan-dard’s use will effectively end. CMS will revise the Medicare Benefit Policy Manual so that coverage standards will instead be based on people’s need for skilled care, regardless whether they show improvement. In addition, CMS will conduct a nationwide educational campaign about the changes, which apply to Medicare and to private Medicare Advantage plans.

Formoreinformationandtofollowthesettle-ment’s progress, visit www.MSActivist.org, or sign up forMS eNEWS at www.nationalMS society.org/signup. n

MarcellaDurandisthecontentplanninganddevelopment manager for the Society.

MS aCtiviStS help Make Change happen.


volunteerS

hall of faMeCongratulations to Barry Engelman and Dr.Wendy Gilmore on their induction into theSociety’sprestigiousVolunteerHallofFame.

In 2002, Barry and his daughterTraci startedTeamEngelmanforWalkMS.BarryandTracico-captained the team, until Barry took overas sole team captain in 2008. To date, Team Engelman has raised over $458,000 throughWalkMS.ButtheEngelmansdidn’tstopthere.In 2008, Traci started the Rowdy Riders team forBikeMS.Again, they recruited colleagues,clients and friends to support the team by volunteering, cycling, and/or donating. TheRowdyRidersraisedover$151,000forthe2012BikeMSCoastalChallenge. In fact, throughtheEngelmans’WalkMSandBikeMSteams,theycrossedthe$1millionmarkinfundraisingin the last decade to support the movement to end MS.

In addition to being a leader in our special events, Barryisalsoanactivetrustee,majorcontributor

to research through Golden Circle, and donates his time and expertise to assist the Chapter withfinancial reports, audits, investments andbudgets.

WendyGilmore,PhDhasvolunteeredforover15yearsasavaluableresearchadvocate,trustee,fundraiser and ambassador for the Chapter.

She currently serves as Associate Professor of Neurology and Celland Neurobiologyat Keck School of Medicine at USC and Division Chief, MSComprehensive Care Center & Research Group. She has served

on panels for the review of grant applications to the National Institutes of Health and theNationalMSSociety.Dr.Gilmoreisnationallyrecognized for her work on the influence ofhormones and pregnancy on immune function.

One of Dr. Gilmore’s most notable volunteercontributions is as one of the founding members of the California Collaborative MS Research Symposium. This innovative symposium connects MS researchers to accelerate MS research progress, and to inspire the post-doctoral students in their labs to continue in the fieldofMSresearch.

Thank you, again, to Dr. Wendy Gilmore, Barry Engelman and also Traci Engelman fortheirsignificantcontributionstosupporttheMS community. n

Dr. Wendy Gilmore

Barry & Traci Engelman, Society Chair Eli Rubenstein and Society CEO Cyndi Zagieboylo

08 MS ConneCtion: winter 2012/2013

three dayS, fifty MileS, a lifetiMe of MeMorieS

This past September, over 200 walkers united to walk 50 miles in 3 days to help create a world free of MS. This inspiring weekend brought laughter, tears, camaraderie and over $800,000 to help fund cutting-edge research, as well as

programs and services for people affected by MS. We could not have asked for a better event! Thank you to our incredible top fundraisers, teams and sponsors for helping us reach our goal! Elite Feet ($10,000+) 1. Anne Allen - $41,563 2. Brian Grey - $11,025 3. Gabriella Resnick - $10,815 4. Jeanne Woodard - $10,350Top Teams Rankings Mission Possible Award ($75,000+) Hurt SO Good!! - $83,935Gold Award ($50,000-74,999) NorCal Street Walkers w/ Good Carma - $64,252

Thank you to our generous sponsors for helping us put more money toward our mission to create

a world free of MS.

®®

inSide look:

Challenge Walk MS would not be a success without individuals like Diane. Diane raised $5,520 and her team, Team Diane raised a grand total of $8,050.

Diane was diagnosed with MS three years ago and the Challenge Walk has been a way for her to make a difference in her battle with MS.

“We had to find a way to take control back and make a difference,” Team Diane shared. “The Challenge Walk gives us a way to do both. This year’s theme, Super Heroes, was a perfect fit for us. We felt empowered to fight for life without MS.” As second-year participants of the Challenge Walk MS, Team Diane stated that “being a part of this event feels like a family; walking, talking, laughing, crying, eating, beating feet and yes, even sweating together.” Team Diane looks forward to many more Challenge Walks together!

09nationalMSSoCiety.org/Cal | 1-800-344-4867

walk MS

be inSpired. get ConneCted. walk MS.MSdestroys connections, interrupts the flowof information between the mind and body, and pulls people’s lives off course and away fromoneanother.Soit’sonlyfittingthatourconnectionswouldbeitsgreatestenemy.Whatif we could connect every person living with MS? Every person who cares about someone with MS. Every family affected by it. Everyone who has seen what this disease can do to people.

What if we could come together, even oneday a year, to show the power of connections? AtWalk MS, our connections become morepowerful than the connections MS destroys.

Register today and start fundraising at WalkToEndMS.org or call 310.479.4456 to get started.

The money you raise at Walk MS supportspromising research to stop the disease, restore function that has been lost and to end MS forever. Your dollars also help fund programs for 19,000 people living with MS and theirfamilies in our local communities. n

04.07.13Greater LA PasadenaRoseBowl

04.13.13 Desert Cities PalmDesert Civic Center Park

Fresno WoodwardPark

Long Beach BelmontPool

04.20.13 Inland Empire CitizensBusinessBankArena

Las Vegas Sunset Park

San Fernando Valley WoodleyPark

San Luis Obispo Mission Plaza

04.27.13 Antelope Valley Lancaster Marketplace

Conejo Valley Conejo Creek Park

Santa Barbara LeadbetterBeach

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

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dinner of ChaMpionSThe 38th annual Dinner of Champions onSeptember 24th in Los Angeles was a huge success, raising $2.1 million to support MSresearch, programs and services. The gala event honoredJeffRobinov,President,WarnerBros.Pictures Group. Director Christopher Nolanand his wife, producer Emma Thomas, presented the award to Robinov in recognition of his and WarnerBros.’continuedsupportinhelpingtheSociety move closer toward a world free of MS. Melissa Sherak Glasser, who was diagnosed with MS in1987when shewasonly15years old,waspresentedwiththeDorothyCorwinSpiritof Life award for educating, motivating and inspiring so many to live well and pay it forward.

Rock musician Chris Cornell and Carolina Liar performed at the dinner. More than

1,400guests alsoenjoyed tributefilmscreated by Mob Scene and a video update, produced by ToyBoxEntertainment,onMSresearchprogressatUCLA,USCandCedarsSinai.ByronAllenwas master of ceremonies for the 20th year and also servedwith JoeRoth andTomSherak asDinnerChairs.

In the last twenty years, under the leadership ofSherak,theDinnerofChampionshasbeenoverwhelmingly embraced by the entertainment industryandraisedanextraordinary$47million.Thank you to Tom and Madeleine Sherak and the countless companies and individual donors who have generously contributed and propelled the movement forward exponentially to end MS. n

Dan Glasser, Melissa Sherak Glasser, Maya Sherak,

Gabriella Sherak

Ron Howard, Christopher Nolan & Jeff Robinov

© A

lex J.

Ber

liner

/AB

Imag

es

Tom & Madeleine Sherak

Ben Affleck & Jeff Robinov

MS ConneCtion: winter 2012/2013

John Corbett

11

The 6th anniversary Dinner of Champions Northern Nevada, honoring community leader Perry Di Loreto, on August 29th in Reno raised over $91,000. Thanks again to host Silver Legacy Resort Casino and chairs Mike Houghton and Norm Dianda for their leadership in this event’s most successful fundraiser to date.

KMPH Fox 26’s gregarious anchor Kopi Sotiropulos was at a loss for words as he accepted the award at the inaugural Dinner of Champions Fresno on September 13th. The moving evening raised $40,000. Thank you to chairs Steve Alfieris and Elaine Sotiropulos for initiating this new event in the community.

David Lander & Ron Perlman

Steve Alfieris, Kopi Sotiropulos, Fotini Alfieris

Linda Lott, Gen. Ron Bath, Teresa Di Loreto, Sgt. First Class Michael Connell

The KMPH TeamJ. Chad Taitano II, MD & Perry Di Loreto

Jason Alexander Congressman Henry & Janet

Waxman

nationalMSSoCiety.org/Cal | 1-800-344-4867


OnOctober1&2,nearly1,000cyclistsrode30–160milesintheBike MS: Coastal Challenge. The energy and enthusiasm was contagious along thescenicroutesandattheOktoberfest-themedfestival at San Buenaventura Park, withmanycyclists and volunteers dressed in lederhosen and Hofbrau-style decorated team tents. Together, our extraordinary teams, cyclists, volunteers and generoussponsorsraised$1.07million!

Thank you especially to our Century Club, led byTerri-RaeElmerwith$63,655andourEliteTeams, led by returning champs Rowdy Riders with $151,204! Special thanks also to Crimi-nal Minds’ Shemar Moore and The Amazing Race’s Phil Keoghan for again increasing aware-ness of this year’s ride and the MS cause. This year, Keoghan rode tandem with a woman who has MS as part of the “Together in MS” inspi-rational campaign to demonstrate that, despite theirdisease,themorethan400,000Americans living with MS can still aspire to do great things. Thanks to “Together in MS” for also hosting our Fridaynightpastadinner. bike MS Coastal Challenge 2013October 12 & 13 • Ventura, CAregister today!www.bikeMSsocal.org bike MS vegas Challenge 2013november tbd

Thank you to our sponsors

going the diStanCe


Then, on November 10 & 11, a smaller butmighty group of 250 cyclists faced blizzard conditions at the 27th annual Bike MS: Vegas Challenge.Wildweathercouldn’tdampentheirspirits;andhotchocolate,blanketsandheatlampswere highlights at the festival at Cleveland Clinic LouRuvoCenterforBrainHealth.Dr.TimothyWest, who has been dedicated toMS researchsincehisownmotherwasdiagnosedin1992andheadstheCenter’sforBrainHealthMSprogram,rode 65miles on a stationary spin bike at the finishfestivalsothathewasavailabletoanswerquestions about MS for participants seeking more information. “One of themost exciting thingsabout this event is that it brings together the entire

MScommunity,”saidDr.West.Aswegotoprinton this newsletter, our terrific fundraisers have already raised a record-breaking $190,000 forthis year’s event.

WetrulyhavetheBESTcyclistsandvolunteers–thankyouagain!AndaveryspecialthankyoutoCaesars Foundation for stepping forward as Presenting Sponsor of both the Coastal and Vegas Challenge this year.

Thank you to our sponsors


living with MS

with a little SupportByVERONICAMCTIERNAN

For severalyears after Iwasdiagnosedwithmultiple sclerosis in 2004, I insisted that Idid not need any assistive aids in order to continue living my life as I wanted.

Atfirst,myMSaffectedmeminimally.Ihadsome balance issues, and some weakness on my right side. I walked with a little hippity hop, but did not trip, was able to do stairs as long as there was a rail or a friend to lean on, and could walk a fairly good distance. These activities often wiped me out, but I could do them, and that is what I focused on. I routinely dismissed using a cane, saying Ididn’tneed itandwasabletodo justfinewithout it, but in reality it was pride that was playing with my head. I simply did not want others to see me using an assistive aid.

Then one day in 2006, I happened to finda cane in my closet that I had been storing for someone else. I decided to use it to walk alongmyunevenyardtofillthebirdfeeders.Then I started using it while gardening to help me get up and down and in and out of flower beds.yes, Iwas self-conscious aboutwhat the neighbors would think, but I felt the freedom of using the cane immediately, and I soon started calling it my “garden cane.”

However, other challenges began cropping up.Whilemygarden canehelped, it didn’taddress my fatigue when digging with a regular shovel or garden fork. I needed both hands to manage these heavy tools, which left me no arm to use to lean on anything and no strength to dig while standing. My Internet searches for “adaptive gardening” onlybroughtupsuggestionsofraisedflowerbeds. This didn’t help me with my already-established perennial beds, so I would just get discouraged and think I had to settle for a half-hearted garden full of weeds.

Then one day I thought to search for “adaptive gardening TOOLS.” I learnedabout ergonomic tools with extensions and cuffs for attaching to one’s forearm.Now Icould successfully garden with one hand while standing (and leaning on my garden cane, of course!). The hand tools also gaveme the leverage I needed, and the garden seat I ordered completed the package for me. The firstdayIgotthetoolsIspenttwohoursinmy garden, and I did so much work that I got a blister on my thumb. It was a badge of accomplishmentforme:myfirstgardeningveroniCa with her “garden Cane.”


blister in 10 years. I was delighted that what I felt when I finished was a very satisfiedtiredness, and not the dreaded MS fatigue.

My new mantra? “I cane so I CAN.” Now,without embarrassment, I can whip out my collapsible cane from my bike bag after completing a ride on my bicycle if I feel the need.OrIcanuseaPINKcanetomatchmydress for my niece’s wedding.

I wish I didn’t have MS, and I dream of gaining back what I have lost, but in the meantime, I will continue to use my cane, adaptive gardening tools and whatever else I find I need.WhereI used to see assistive aids as pointing out my weaknesses, I am now so aware of them being just the opposite. They allow me to be who I am,andtodowhatsatisfiesmysoul.Whatelseis there in life?

Veronica McTiernan works as a behavior therapist with people with developmental disabilitiesinWestchesterCounty,N.y. Besidesgardening,sheenjoysbiking,adaptiveskiing and being in the great outdoors with her friends and family.

Consult a physical or occupational therapist about mobility devices that will work best foryou,andhowtouse themsafely.AnOTwill also be able to recommend both low- and high-tech assistive aids for various activities ofdailyliving—calltheSocietyat1-800-344-4867forreferrals.Formoreinformationaboutthe range of assistive aids available, search for “assistive devices” at www.nationalMSsociety.org or browse www.abledata.com.

foundationS

benevolent baCkerS Wearegratefultothefoundationandcorporatesupportersforatotalof$67,087 ingrantawardsreceivedJune1,2012– October31,2012:

•$27,000fromtheFriends of the National Multiple Sclerosis Society for general operatingsupportoftheNorthernNevadaRegionalOffice

•$10,000fromtheJohn and Maria Laffin TrustfortheNOWresearchcampaign

•$10,000fromtheSan Manuel Band of Mission IndiansfortheBetterLivingprograminRiversideandSanBernardinocounties

•$9,987fromtheChange A Life Foundation for the special needs of two individuals with MS

•$5,000fromtheFertitta Foundation for the BetterLivingprograminLasVegas

•$2,600fromtheFreeman E. Fairfield Foundation for HOPEatHillcrest/HillcrestCare Center in Los Angeles

•$2,500fromtheAllergan Foundation for theOptimalWellnessprogramsinSantaBarbaraCounty


More wayS to givea Meaningful holiday gift Let this holiday season be an opportunity to share the spirit of joy and love for individuals affected by MS and their families. Tribute & Memorial gifts are an easy and thoughtful way to make a difference and show someone you care. When you make a donation tosupport a world free of MS, we will 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 callDanielle Katayama at 310.479.4456 ext.66106.

leave a legaCyThe Lawry Circle is the National MSSociety’s recognition program for friends who have demonstrated a deep commitment to improving the lives of those with MS by establishing a deferred gift for the Society. The Lawry Circle recognizes Society founder Sylvia Lawry and thousands of others whose hard work, individual contributions, and planned giving commitments provided assets and vital momentum that support our efforts today. Bymaking aLawryCircle commitment, you

elevate the Society to “family.” It reinforces our sense of purpose and community, and will help sustain and inspire us until the day when the world isfinallyfreeofMS.

Because all deferred gifts represent anexpression of lifetime commitment to the Society, the Lawry Circle has no minimum gift level and membership is for life. Individuals automatically become members of the Lawry Circle when they designate a deferred gift to the Society, including: •Bequestintentionsinawill •CharitableGiftAnnuities •NamingtheSocietyasbeneficiary

of a retirement account or trust •NamingtheSocietyasbeneficiary

of a life insurance policy or donation of a policy

Formoreinformation,pleasecontact DianeSantat310.479.4456ext.66185.

nationalMSSoCiety.org/Cal | 1-800-344-4867 17

prograMS Conn

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newly diagnoSed, next StepS 8 Thursdays, Jan.10 – Feb. 28, 6:30 – 7:30 pmTelephone Support Group

People who are living with MS share many commonalities, and support groups can be a great place to discover and explore those. However, sometimes people who are newly diagnosed feel like their concerns and interests differ somewhat from those who have been living with the disease for much longer. Forindividuals diagnosed in the last three years, this positively focused group allows the opportunity to share information and concerns with others who are newly diagnosed.

Join Beth Maldonado, LCSW in discussionsaround employment, communication with others, stress, exercise, fatigue and other symptoms, alternative therapies, energy management, and much more.

ladieS’ night 3rd Tuesday of the month, 6:00 – 7:00 pmA Telephone Support Group for Care Partners Lifeisstressfulenough.Familyresponsibilities,career obligations — even the everyday grind of battling rush-hour traffic, racing to the supermarket and getting the laundry done — can contribute to raising our anxiety level. When you add in the responsibility of caringfor a loved one with a chronic illness, life can sometimes seem overwhelming. Talking, sharing with others can alleviate some of the stress and isolation that we sometimes feel.

Sign Me up!Spaces are limited to 8 to 10 participants for eachgroup,andregisteredonafirstcome,firstserve basis. To register, please contact Mary Ann Holm, Manager of Clinical Services at [email protected]

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free froM fallSDo 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 tripped or had an unexpected fall?

FallsarequitecommonamongpeoplewithMS.Butthereissomethingyou can do to reduce your risk and prevent unnecessary injuries that can impact your well-being.

Free From Falls is an 8-week fall prevention programdesignedspecificallyforpeoplewith MS who are able to walk, but may be at risk for falling.

In just 8 weeks you will: •Gainanincreaseawarenessofwhatcan

contribute to falls •Identifystrategiesyoucanusetoprevent

falls in your home and in the community •Engageinanddevelopafitnessplanto

improve balance, endurance, strength and mobility to reduce fall risk

•Increaseyourconfidencetoavoidfallsandto manage falls, if they do occur.

In a fun, supportive group atmosphere, expert instructors in rehabilitation, health and wellness will help you develop a personal plan to maximize your safety and well-being.

Enrolling now for classes beginning in February!

TERRIOPhysicalTherapy&Fitness– Aquatics Center, Bakersfield8Thurs.,startingJan.24,1:00–3:00pmContactKimat661.321.9512.

SanJoaquinValleyRehab,Fresno8Wed.,startingFeb.6,5:30-7:30pmContactFotiniat559.439.2154.

Helen Gray Education Center, Joshua TreeIntrotoFreeFromFalls Sat.,Jan.5,10:00am-2:00pmContactSuellenat760.776.5740.

NevadaSeniorServices, Las Vegas8Thur.,startingFeb.21,1:00-3:00pmContactLindaNowellat702.736.1478x66701.

Precision Rehabilitation, Long Beach 8Thurs.,startingFeb.21,1:00–3:00pmContactTiffanyat310.479.4456x66130.

The Marilyn Hilton MS Achievement Center at UCLA, Los Angeles8Mon.,startingFeb.25,10:00am-12:00pmContactTiffanyat310.479.4456x66130.

Casa Colina Center for Rehabilitation, Pomona8Wed.,startingFeb.20,11:00am-1:00pmContactCrystalat909.949.1363.

The Continuum, Reno8Wed.,startingFeb.20,11:00am-1:00pmContactLindaLottat775.329.7180.

Annenberg Center, Rancho Mirage8Wed.,startingFeb.610:00am-12:00pm ContactSuellenat760.776.5740.


19

dial, liSten & learn

Joinusfromthecomfortofyourownphoneforone or more of these free conference call programs on a diverse range of topics for people living with MS. Pre-registration is required for each of these programs. Prior to the teleconference, you will receive a toll-free dial-in number.

Sign me up! 800.344.4867 www.nationalMSsociety.org/CALcalendar

Managing the diSeaSe Complementary and Alternative Medicine and MS Thursday,February7,6:30–7:30pm

Approximately 75% of Americans with MSuse one form or another of complementary and alternative Medicine (CAM), generally

in combination with their prescribed MS treatments. Allen Bowling, MD, PhD willdiscuss some of the options and lifestyle choices to consider when looking at CAM. Dr. Bowling is Medical Director of the MSService and Director of the CAM Service attheColoradoNeurologicalInstitute.HeisalsoClinicalAssociateProfessorofNeurologyattheUniversity of Colorado.

eMotional wellneSSPracticing Ways to Increase Our Joy Tuesday,January8,2:00–3:00pm orTuesday,January22,12:00–1:00pm

Learn ways to increase and enhance our joy throughthelensofthePast,PresentandFuture.CatherineFreemire,LCSWwillshareconcretestrategies that help to enliven us by deepening our experiences of joyful times already lived or yet to come.

Our Mindsets and How to Change Them Tuesday,February5,2:00–3:00pm orTuesday,February19,12:00–1:00pm

Weallliveandfunctionwithdifferentmindsets.Some of these mindsets are part of our temperament at birth and some of them were learned from conditioning in our environments. Some constrict our ability to learn and others give us hope in the face of failure. Learn from life coach and psychotherapist Catherine Freemire,LCSWhowtorecognizethetypeofmindsets you unconsciously use and how to change yours if it is not working for you.



finanCial aSSiStanCeWe offer Direct Financial Assistance to peo-ple 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,call800.344.4867or310.479.4456.

MediCal CareMS Physician Consult program: Fundingfor one-time consult with an MS specialty neurologist.Musthavelimitedgeographicand/or insurance resources.

Physical/Occupational/Speech Therapy: In-homeevaluationandfivetosixfollow-upvisitsfor a person who cannot leave home.

Individual counseling/telecounseling sessions: 6–10visitsperyearwithalicensedtherapistwhois experienced in MS.

Support ServiCeSSherak Emergency Fund: Funding forunexpected one-time situations (food, rent, utilities).Officialdocumentationdemonstratingproof 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 moreaboutaspecificself-helpgrouplistedbelow, orcontacttheChapterat800.344.4867.

at-hoMe telephone group3rdWednesday,1:00pm Toll-free dial-in number: 1-888-346-3659,entrycode2713#

loS angeleS County Antelope Valley 3rdTuesday,6:30pm,RobertsonHonda CallMissy661.406.0741

Burbank 4thWednesday,3:00pm CallNanat818.762.5432

Central LA 4thSaturday,noon,BilbrewLibrary CallAlvaat323.233.5413

Downey - MSWellnessFocus Thursday, 10:00 am Rancho Los Amigos Rehabilitation Center CallStaciat310.603.6853or310.918.8977

GLAMS (Gay and Lesbian Support Group) 3rd Saturday, 1:00 pm, Location varies ContactRonniat626.392.4321or [email protected]

21Lakewood/Long Beach 3rd Sunday, 1:00 pm, Lakewood Youth Center ContactFranat562.925.4405or [email protected]

Los Angeles 3rdThursday,6:00pm,FairfaxBranchLibrary CallMichaelat213.804.1249orAllisonat323.876.7606

Monrovia/Pasadena 2ndMonday,10:00am,FirstPresbyterianChurch CallAynnat626.303.4343

North Hollywood - DrummingGroupLearnauniquewaytoexpressyourself.Nomusical experience needed. 2ndSaturday,3:00pm,RemoDrumCenter.CallBethat818.219.1715

Northridge–SpanishSpeakingGroup 2ndSaturday,10:00am,Child&FamilyGuidance Center. Contact Maria at [email protected]

Santa Clarita 2ndThursday,6:30pm,BlessedKateriCatholicChurch.CallMaureenat661.803.0315or Eiresat661.219.5561

South Bay/Harbor City 3rdThursday,4:00pm, GardenaMaymeDearLibrary CallPattieat310.769.0694

Tarzana–Let’sPlaysocialgroup 1st Saturday, 12:00 pm, Tarzana Community Center.CallLindaat818.222.7678or [email protected]

West Covina 2nd&4thWednesdays,11:00am,SeniorCenterNorthBuilding.CallTaddat626.962.7909ortakeena@verizon.net

22Santa Maria 3rdSaturday,10:30am,CaféNoir CallDevinat805.772.2046

Simi Valley 1st Monday, 10:00 am, Cornerstone Church CallDennisat805.584.2526

Thousand Oaks 2ndMonday,9:30am Goebel Senior Adult Center CallTinaat805.581.2264

Ventura LastFriday,11:30am,Carrow’[email protected]

inland eMpire/CoaChella valleyLake Arrowhead 1st Friday,4:00pm, Location varies CallJoyceat909.337.7573

Ontario 1st Saturday, 10:00 am, Redeemer Lutheran Christian Church. Call Emily at909.851.6204orKathyat909.621.3519

Palm Desert 2ndWednesday,6:00pm,OliveGarden ContactSuellenat760.776.5740

Palm Desert 2ndThursday,12:00pm,OliveGarden CallRichardat760.899.4174

Rancho Cucamonga - Moms with MS 3rdTuesday,12:00pm,RanchoCucamongaResourceCenter.CallAnaMariaat909.463.0334orKimat909.904.0352

West LA LastMonday,6:30pm,NationalMSSociety ContactNancyat310.827.5714or [email protected]

West LA–Men’sGroup 3rdTuesday,6:00pm,NationalMSSociety CallLarryat310.926.1641

Channel iSlandSArroyo Grande 2ndTuesday,6:00pm,UnitedMethodistChurch CallEllenat805.343.6094or [email protected]

Lompoc 1st Saturday every other month VeteransMemorialBuilding CallDevinat805.772.2046fordetails

Morro Bay LastSaturday,10:30am St. Peters by the Sea Church CallDevinat805.772.2046.

Ojai 2ndThursday,7:00pm OakViewCommunityCenter or4thTuesday,12:30pm,EggsNPotatoes CallDonnaat805.646.3750orTammyat805.648.6402

San Luis Obispo - Community Circle Fridays,10:00am,FirstPresbyterianChurch Includes adaptive exercises, wellness workshops and more. CallDevinat805.772.2046

Santa Barbara-MSFriendshipCircle 3rdWednesday,11:30am,NationalMSSociety CallFrancineat805.682.8783


23Riverside 1stSaturday,10:00am,TuckerMedicalBuilding CallGilbertat951.544.1441orKatrinaat951.906.1752

Temecula 1st Wednesday,10:00am,TrinityLutheranChurch [email protected]

Upland LastWednesday,10:00am,CalvaryChapel CallDeniseat909.519.4410

Yucaipa 3rd Tuesday, 2:00 pm, Good Shepherd Church CallClareat909.795.5128orTomat909.795.1717

nevadaCarson City 3rdThursday,1:00pmand6:00pm Carson City Senior City, Carson Room CallNormaat775.721.6565

Las Vegas/Henderson - Oasis group 1st Saturday, 11:00 am CallEdat702.271.3007orJerryat702.285.6479

Las Vegas - MS Lunch Club 1stTuesday,11:30am,LosPradosCountryClub CallDarleneat702.240.3210 MustRSVPandpurchaselunchfor$10/person

Mesquite 1st Thursday, 10:00 am, Virgin Valley Home Care CallEricaat702.346.7565

Reno/Sparks ”Live Life with Passion with MS” group 4thThursday,5:30pm,TheContinuum-Reno

2ndThursday,5:30pm,MoreToLife-Sparks CallHeidiat775.240.1085

Truckee 2ndThursday,5:30pm,TahoeForestHospitalCafeteria,CallRickat530.550.0654

San Joaquin valleyBakersfield 1stThursday,7:00pm,HealthSouthRehabHospital.Robertat661.587.1445

Bakersfield 2ndWednesday,noonor4thWednesday,9:00am Lorene’s Coffee Shop. Call Mary at 661.368.2910,Mikeat661.340.3455or Sarahat661.865.6238

Bakersfield -FamilySupportGroup 4thSaturday,10:00am,NationalMSSociety CallKimat661.321.9512

Clovis/Fresno 3rdSaturday,9:30am,SanJoaquinRehabHospital Callyolandaat559.908.4644orDorisat559.299.2072

Hanford 1stSaturday,10:00am,FirstChristianChurch CallBarbaraat559.584.1903or Debraat559.585.8054

Tehachapi 2ndMonday,4:00pm Tehachapi Moose Lodge CallLindaat661.822.7440or [email protected]

Visalia2nd Saturday, 10:00 am KaweahDeltaRehabCallSandraat759.759.5867


2440S.SepulvedaBlvd.,Suite115 LosAngeles,CA90064

Southern California & Nevada Chapter 2440S.SepulvedaBlvd.,#115 LosAngeles,CA90064 310.479.4456 800.344.4867

CALIFORNIA OFFICES

Channel Islands 14WestValerioStreet SantaBarbara,CA93101 805.682.8783 SanLuisObispo 805.772.2046

Coachella Valley 73-710FredWaringDr.,#103 PalmDesert,CA92260 760.776.5740

Inland Empire 3110E.GuastiRoad,#320Ontario,CA91761909.949.1363

Kern County 180030thStreet,#105 Bakersfield,CA93301 661.321.9512

San Joaquin Valley 7472N.FresnoSt.,#210 Fresno,CA93720 559.439.2154

NEVADA OFFICES

Northern Nevada 4600KietzkeLn.,#K-225 Reno,NV89502 775.329.7180

Southern Nevada 2110EastFlamingo,#214LasVegas,NV89119 702.736.1478

SCholarShipS

MS shouldn’t stand in the way of an e d u c a t i o n . The Society’s s cho la r sh ip program helps

highly qualified students whohave been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. Scholarship applications for 2013 awards are now beingaccepted through January 15,2013.Fordetailedguidelinesandapplication information, please visit www.nationalMSsociety.org/CALscholarships.

Documents

National MS Society, Southern California & Nevada Chapter's Winter 2012/2013 issue of MS Connection