MS Connection winter 2011 issue

MOVING TOWARD A WORLD FREE OF MS | WINTeR • 2011

INSIDE THIS ISSUe

SOUTHeRN CALIFORNIA & NeVADA CHAPTeR

Research PAge 4

Special events PAge 10

Walk MS PAge 14

Programs PAge 18

On November 3rd, three exceptional Southern California & Nevada Chapter volunteers were inducted into the National MS Society’s prestigious Volunteer Hall of Fame. Congratulations to Fern Seizer and René Webb who were honored for their fundraising prowess, and to Dr. Leslie Weiner who was recognized for his efforts as a volunteer scientific researcher.

In the last 18 years, Fern Seizer has worked tirelessly, in her daughter’s honor, to raise more than $131,000. She raised the majority of those dollars through an annual bridge tournament that she spearheads with the proceeds benefiting MS research (page 9). She and her husband Bob also donate generously to Golden Circle, Walk MS and the Dinner of Champions, and are proud Lawry Circle members.

As an active Chapter trustee, fundraiser and ambassador, Fern shares her time, knowledge of nonprofit organizations, and fundraising expertise. She has been a leader in tapping into her contacts to open doors to many significant foundation gifts for the Chapter. For example, ten years ago, Fern introduced the Chapter

OuR HALL OF FAMERS

CONTINuED ON PAGE 8

DOubLING yOuR DONATIONThe Kenrose Kitchen Table Foundation, Steve and Caroline Kaufer Family and Tuffli Family Foundation together have posed a $500,000 Challenge for this

year’s Golden Circle campaign. If Golden Circle donors contribute a total of $500,000 by December 31, 2011, the campaign will be ensured an aggregate of at least $1,000,000!

All Golden Circle gifts contributed October 1 – December 31, 2011 will count toward the $1,000,000 Challenge, regardless of restriction or giving level!

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. Contact Elicia Lopez at 310.479.4456 ext. 66111 if you have any questions or would like more information about Golden Circle.

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

FINANCIAL ASSISTANCEA Helping Hand When It’s Needed Most

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:

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 100 hours per year in combination with Grisanti Respite Fund if needed.

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 100 hours/year in combination with Rhoda Goetz Home Assistance Fund if needed.

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.

Checks are made out and sent directly to the vendor. For more information, call 800.344.4867 or 310.479.4456.

800.344.4867PUbLICATION OF THe NATIONAL MULTIPLe SCLeROSIS SOCIeTy Southern California & Nevada Chapter

Chairman • Paul M. Mahoney, Esq.

Chapter President • Leon LeBuffe, Ph.D.

Newsletter Editor • Marni Deckter

Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. National MS Society medical advisors recommend that people with MS talk with their health care professional about using one of these medications and about strategies and effective treatments to manage symptoms. If you or someone you know has MS, please contact the Society today at nationalMSsociety.org or 800.344.4867 to learn about ways to help manage MS and about current research that may one day reveal a cure.

The National Multiple Sclerosis Society (NMSS) does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The NMSS assumes no liability for the use of contents of any product or service mentioned. Information provided by the NMSS is based upon professional advice, published, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The NMSS recommends that all questions and information be discussed with a personal physician.

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

© 2011 NMSS Southern California & Nevada Chapter; Published Quarterly — Winter 2011

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I am grateful for the new Progressive MS International Consortium which will share resources among five leading MS Societies in Europe and North America and the MS International Federation to pursue promising treatments for progressive MS, as well as therapeutic research to improve quality of life.

I’m grateful to UCLA, the Conrad N. Hilton Foundation and Steve Hilton, Foundation President for ten years of The Marilyn Hilton MS Achievement Center at UCLA. It was a joy to celebrate this landmark anniversary in July and to know that 260 people with progressive MS have benefited from six months or longer at our marvelously successful Center. And, after having a short waiting list for years, there are now immediate openings at the Center…just give us a call.

I’m grateful for the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas which has hired Dr. Tim West as its chief MS clinician and is partnering with us to improve care in Las Vegas. Dr. West and his colleagues formed a team for the Bike MS: Vegas Challenge, too!

I’m grateful for the Eric Small Centers for Optimal Living with MS at Rancho Los Amigos, USC and

Casa Colina. The therapists and administrators at Rancho, Casa and SC have been great partners in the fight against MS.

I’m grateful to Joyce Nelson for seven terrific years as our National President and CEO, and I’m very happy that the National Board of Directors has selected Cindy Zagieboylo as our new CEO.

I’m very grateful to our fantastic walk and bike teams for our most successful Walk MS and Bike MS events in years. I’m especially grateful to the Rowdy Riders (Barry and Traci Engelman and David Weise), Team MS Achievers – UCLA (Stacy Nonoguchi), and KFI Bike Team (Terri-Rae Elmer, #1 overall fundraiser!), and NOW – MS Society Cynergy Team (Phil Keoghan).

I’m very grateful to Tom Sherak for nineteen years of unbelievable success due to his extraordinary efforts with our Dinner of Champions. Tom is our Superman!

I’m very grateful to Chair Paul Mahoney, Chair-elect Dina Tecimer and all our Board for going above and beyond again and again in their roles as ambassadors and fundraisers for the Society.

I’m grateful to a fantastic staff, led by the world’s best management team — Denise Nowack, Susan Bradley, Kate McIntosh, Pamela Thompson, Marni Deckter, Jay Schoenau and Cheri Lopez.

Finally, and most of all, I’m deeply grateful to people with MS and their loved ones for inspiring me and teaching me an enormous amount in twenty years as the president of this quite amazing and wonderful Southern California & Nevada Chapter.

Happy Holidays everyone!

Leon

PRESIDENT’S MESSAGE

Leon LeBuffe, Steve Hilton, Tom Sherak, Dr. John Mazziotta and Dr. Robert Collins at the

10th Anniversary celebration of the Achievement Center

GRATEFuL, THIS HOLIDAy SEASON

4 JOIN THe MOVeMeNT: nationalMSsociety.org

RESEARCH

52 MS GENES IDENTIFIED

In the largest MS genetics study ever, researchers have documented 29 new genetic variants associated with MS, and confirmed 23 others previously implicated in the disease.

Most of the genes were related to immune function, and more than a third have already been linked to autoimmune diseases. A large number were related to T-cell function; T cells, a type of white blood cell, play a major role in the immune system’s attack against the nervous system in MS. Also, two genes linked to vitamin D were found: research increasingly suggests that low vitamin D levels are a risk factor for developing MS. (The Society is funding a new clinical trial of vitamin D supplementation.)

The study, a collaboration between the International MS Genetics Consortium and the Wellcome Trust Case Control Consortium 2, was published in the August 11, 2011, issue of Nature, and involved nearly 10,000 people with MS and more than 17,000 who do not have the disease. While the results of genetics studies haven’t so far resulted in the ability to do individual genetic counseling, these and further findings should help uncover what causes MS and improve treatments. The Society is funding a second large study to confirm and expand these results.

NEW MS THERAPy MOVES FORWARD The second phase III study of experimental intravenous therapy alemtuzumab (proposed brand name Lemtrada™) for relpasing-remitting MS found that the drug met two primary endpoints. Researchers found that people treated with the drug had a 74% reduction in the risk of MS relapse compared with those on the interferon Rebif, and a 71% reduction in the risk for sustained worsening of disability. The study, called CARE-MS II, involved 840 people with relapsing-remitting MS.

Alemtuzumab is a monoclonal antibody that attacks the cells in the immune system that contribute to myelin damage. It is presently approved by the FDA to treat B-cell chronic lymphocytic leukemia. Sanofi and Genzyme, the drug’s sponsor, plan to seek approval of this intravenous drug for MS in the U.S. in early 2012. In June 2010, the FDA designated alemtuzumab a “Fast Track Product,” which should expedite its future review after results of the phase III trials are submitted.

bONE HEALTH MAy bEGIN EARLyPeople with MS have long been known to be at risk for bone loss, but a study published in the July 12, 2011, issue of Neurology suggests that it can occur very early, even before MS has been diagnosed.

According to the study, low bone mass is more widespread among people newly diagnosed with MS, or those with clinically isolated syndrome (or CIS, a single episode of MS-like symptoms), than among people without MS. Study researchers measured bone density in 99 people newly diagnosed with MS or CIS, compared to 159


RESEARCH

people without MS. More than half of the people with MS or CIS had low bone mass, compared to 37% of controls.

Previously, scientists had speculated that people with MS are at greater risk of low bone density and broken bones due to factors such as lack of exercise stemming from mobility issues, medications or low levels of vitamin D (which plays a significant role in building bone). The researchers suggested that even early in MS, people should pay attention to good bone health by getting adequate vitamin D and calcium, as well as by performing weight-bearing activities. For more ideas on promoting bone health, go to nationalMSsociety.org and search for “You Can Build Healthier Bones.”

MS RESEARCH TAKES CENTER STAGEIn October, About.com blogger Dr. Julie Stachowiak and producer/director Kate Milliken—both of whom live with MS—reported live from the world’s largest MS conference at the Society’s blog.

At the fifth joint meeting of ECTRIMS and ACTRIMS (the European and Americas Committees for Treatment and Research in MS), over 5,000 of the world’s leading scientists and clinicians gathered October 19-22 in Amsterdam. Results from four phase III studies on MS therapies were presented, along with the latest research on MS risk factors, treatments and diagnosis.

Join the conversation at blog.national MSsociety.org, and connect with people with MS, the people who care about them and MS experts.

Dr. Julie Stachowiak, the Society’s Chief Research Officer Dr. Timothy Coetzee, and Kate Milliken


NEWS

MEDICARE DEADLINESMedicare recipients still have the opportunity to review, renew or replace drug plans during the annual open enrollment period, which began October 15 and runs until December 7 this year. The 2006 drug law imposes a penalty on those who need prescription drug coverage (and who do not have creditable coverage), but do not sign up in time. That penalty grows larger every year.

In 2012, the “donut hole,” or gap in prescription drug coverage, still exists, but the Affordable Care Act requires insurers to give Medicare Part D participants a 50% discount on most brand-name drugs, including the MS disease-modifiers, while they are in the coverage gap. Drugs prescribed “off label” for MS symptoms are still excluded from coverage and exempt from the discount.

Visit medicare.gov for general information, publications and to compare the drug plans available in your area. Call an MS Navigator® at 1.800.344.4867 for free health-insurance counseling.

People with a Medicare private health plan, also known as a Medicare Advantage plan, (but not including a Medicare Medical Savings Account plan), can switch to Original Medicare during the Medicare Advantage Disenrollment Period from January 1, 2012, to February 14, 2012.

The “Extra Help” program

People who receive SSI (Supplemental Security Income) benefits, or who get help from the state Medicaid program to pay Part B premiums (Medicare Savings Plan), automatically qualify for “Extra Help,” which means no donut hole for prescription drugs as well as lower coinsurance and copayment costs. People with low incomes also qualify. Apply directly through the Social Security Administration at www.socialsecurity.gov/i1020.

FLu SHOT, OR NOT?Flu season brings not just coughs and sniffles, but the question: Get a flu shot, or not?

Because there is a much higher risk of an MS relapse due to flu than to the flu vaccine, the Society generally recommends that people with MS get the shot. “Don’t wait for flu season to catch up with you. Discuss getting the flu shot with your doctor to protect yourself this year,” said Rosalind Kalb, PhD, vice president of the Society’s Professional Resource Center.

The injectable flu vaccine—which is an “inactivated” vaccine—has been studied extensively in people with MS and is considered quite safe. It may be taken by people on an interferon medication, glatiramer acetate, or mitoxantrone. It is not yet clear if the vaccine is as effective for those talking natalizumab or fingolimod.

It’s best to delay vaccination for four to six weeks after the onset of any serious exacerbations. People with MS should avoid FluMist, a live-virus flu vaccine (sometimes called LAIV for “live attenuated influenza vaccine”) delivered via nasal spray. For more information, go to nationalMSsociety.org/vaccinations.


NEWS

TAx DEDuCTIONS bEyOND MEDICINEMany of the expenses associated with managing MS might be tax deductible, beyond medicines. (Keep in mind that only unreimbursed medical expenses that exceed 7.5% of your adjusted gross income are deductible.) Here are additional possibilities:

• Equipment and extras, such as service dogs (and dog food!) and transportation to doctor appointments via car service or taxi if you can no longer drive.

• Home modifications that don’t increase a home’s value. “Get a doctor’s prescription for ramps, wider doorways, grab bars, even a

swimming pool, as well as a letter from a real estate agent stating that these changes don’t make your home more valuable,” suggests Anne Davis, program director of Legal Services for the Society’s New York City and Southern New York Chapter.

For people receiving SSI or disability benefits, impairment-related work expenses may be deducted from their earnings, if their income might otherwise jeopardize their government benefits.

Two IRS Publications—907, Tax Highlights for Persons with Disabilities (www.irs.gov/pub/irs-pdf/p907.pdf) and 502, Medical and Dental Expenses (www.irs.gov/pub/irs-pdf/p502.pdf)—may be helpful. Consult an accountant to make sure your particular situation is in line with current IRS regulations.

STALWART SuPPORTERSThank you to our foundation and corporate supporters for a total of $437,292 in grant awards received in Fiscal Year 2011. The following grants were received May 1–September 30, 2011:

$20,000 from AEGON Transamerica Foundation for The Marilyn Hilton MS Achievement Center at UCLA

$17,157 from Change A Life Foundation ($10,000 for Respite Care & After Care Services and $7,157 for the special needs of individuals with MS)

$16,000 from the Friends of the National MS Society for general operating support of the Northern Nevada Regional Office

$10,000 from the Henry L. Guenther Foundation for the Eric Small Centers for Optimal Living with MS

$7,500 from the Albert and Elaine Borchard Foundation for the MS Scholarship Program (p. 18)

$5,000 from The Frank and Victoria Fertitta Foundation for CogniFitness in Southern Nevada

$5,000 from the John and Marian Laffin Trust for NOW: An MS Research Revolution

$5,000 from the Albert Parvin Foundation for MS Research

$3,000 from the Freeman E. Fairfield Foundation for HOPE at Hillcrest

$2,500 from the Henry W. Bull Foundation for the Telemedicine Pilot Project in Ventura County

$2,500 from the Confidence Foundation for NOW: An MS Research Revolution

$2,300 from the Ontario Community Foundation for MS Care Coordinator Services for the Casa Colina MS Clinic


ADVOCACyVOLuNTEERS

staff to the Change A Life Foundation (CALF). In the last 10 years, CALF has made 81 grants totaling more than $500,000 for the special needs of individuals with MS and 15 organizational grants totaling over $125,000 to support Chapter services that improve levels of independence, mobility and self-sufficiency, and enhance quality of life.

René Webb has been an active fundraiser and MS ambassador for over a decade. In that time, she has raised nearly $290,000 and generously donated her own dollars. René is a fundraising leader as Walk MS team captain of “Joyful Noise” and as the honoree for the 1st annual Dinner of Champions Inland Empire. In 2007, René also joined the Chapter Board of Trustees where she champions the importance of involving the Inland Empire community in Chapter events and programs.

Living with MS since 1983, René shares her experience to raise MS awareness and inspire others to get involved with the Society. As a well-known and much respected community leader in the Inland Empire, she uses her strong corporate contacts to open doors for the Chapter. René recently realized that the eleven McDonald’s restaurants she owns with her husband Reggie, offered the opportunity to raise public awareness of MS, the National MS Society

and Walk MS. For the last three years, René added Walk MS brochures to the McDonald’s bags at her stores, and for two years she has sold pin-up Walk MS shoes at her restaurants to raise additional donations. She even had drive-through operators asking each customer as they came through if they wanted to support the Society.

Leslie P. Weiner, MD has been an international leader in MS research; a strong advocate for the MS community for forty years; the leader in advocacy for proactive stem cell research in MS; and a leading volunteer among researchers for the Society. His MS research endeavors include a T-cell vaccine, gene therapy, and stem cell research.

Dr. Weiner served as chair of the USC Department of Neurology for 25 years (1979 to 2003), guiding its growth from 3 to 40 full-time faculty members. He was instrumental in building neuroscience at USC, expanding clinical neurology at LAC+USC Medical Center. As Medical Director of the MS Comprehensive Care Center & Research Group at the Keck School of Medicine at USC, he has been the primary care physician for hundreds of MS patients and he has volunteered his services on a regular basis to County/USC Hospital MS clinic for decades.

Thank you again to Fern Seizer, René Webb and Dr. Leslie Weiner for their incredible contributions to support the MS community.

OuR HALL OF FAMERS CONTINuED FROM COVER

Fern Seizer

René Webb

Dr. Leslie Weiner


ADVOCACyVOLuNTEERS

TRuMPING MS

On August 28th, Chapter trustee and Golden Circle members Fern Seizer and her husband Bob Seizer, along with their long-time friends and co-chairs Jackie and Sid Bogin, Shirley and Norman Davidson, and Myrna and Art Weiner hosted the 10th Annual MS Charity Bridge Tournament at the Barrington Bridge Club in West Los Angeles The event raised more than $32,000 to support MS research, which includes a generous $10,000 matching gift from The Annenberg Foundation and a $5,000 grant from the National American Contract Bridge League.

Event participants were eager to sign up for the Tournament, which sold out one month prior to the event date. Overall, 140 people played bridge, and many additional supporters contributed to the cause. Attendees enjoyed an afternoon of lunch and dessert; bridge tips and instructions from World Champion player, writer and teacher Eddie Kantor; bridge play, silent auction and prizes.

“This is an all-volunteer effort, which allows us to maximize our fundraising,” explained Fern. “Barrington Bridge Club donated its space and equipment, and the Bridge Directors, along with Eddie donated their time and services. We and our co-hosts came up with the idea of a Charity Bridge Tournament ten years ago as a way to build on our own interest and contacts to raise money for MS research. It’s my hope that others will think of ways to use their own interests and expertise to raise funds for the MS Society, as Board members Sheri Safan and Chris Ojakian and others have done so successfully.”

Since the Bridge Tournament’s inception, the committee has raised more than $130,000 to support research for a cure for MS. The Chapter would like to extend a special thanks to Fern and Bob, and the entire Bridge committee for their steadfast efforts toward creating a world free of MS.

Eddie Kantor

SEND A CARD AND 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 move us closer toward a cure and improve the lives of people affected by this disease. We will send a lovely, personalized card to the individual of your choice.

A Tribute or Memorial gift is the perfect way to wish someone Happy birthday, send warm wishes for a happy holiday, or remember a loved one.

To make a gift or to find out more about the Tributes & Memorials campaign please visit nationalMSsociety.org/calTM or call Shawdi Ilbagian at 310.479.4456 ext. 66106.


ADVOCACySPECIAL EVENTS

The 37th annual Dinner of Champions on September 12th at the Hyatt Regency Century Plaza Hotel was once again a monumental success, raising more than $1.8 million for MS research, programs and services. The gala event honored Greg Dunn, President and COO, Regal Entertainment Group. Greg and Regal Entertainment Group have generously supported the Dinner of Champions since 1995 and continue to wholeheartedly join the movement to end MS. Phil Keoghan, Chapter trustee and host of “The Amazing Race,” received the Dorothy Corwin Spirit of Life award. The award has historically been given to a person with MS; this year, however, Dinner organizers chose to honor Phil for his remarkable accomplishments in raising MS awareness and much-needed funds for research to stop MS in its tracks, restore function that’s been lost and end MS forever. Phil received a standing ovation after a video tribute created by Chapter trustee Roland Mesa and his partner Barry Samson and their team at Toy Box Entertainment.

Returning for his 19th appearance as master of ceremonies, Byron Allen welcomed nearly 1,400 attendees, including special guests Annette Bening & Warren Beatty, Ned Colletti, John Corbett, Ian Gomez & Nia Vardalos, Joe McIntyre, Ron Perlman, Adam Sandler, D.B. Sweeney and Marlon Wayans. During dinner, attendees watched a heartwarming video — produced by Tom Grane and his team at Mob Scene — documenting just a handful of Chapter staff and volunteers who work tirelessly behind the scenes. Guests were also treated to performances by the Canadian Tenors and Michael Bolton.

We owe tremendous gratitude to our Dinner Chairs, Joe Roth, Byron Allen and trustee Tom Sherak along with their entire fundraising committee and co-chairs — especially Arthur & Britta Schramm, Annis Kishner, Stacy Wilder, and Roland Mesa for their remarkable contribution to our success. Also, we owe many thanks to Regal Entertainment Group for hosting this magnificent event.

Thank you to every one of our donors who support the Dinner of Champions and move us closer each year toward a world free of MS. Together, we do what we cannot do alone keep lives moving forward.

CHAMPIONS IN THE FIGHT AGAINST MS

Greg & Jennifer Dunn, Madeleine & Tom Sherak

The Canadian Tenors

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Joe McIntyreBritta, Arthur & Bryce Schramm

John Corbett & Nia Vardalos Ron Perlman Louise & Phil Keoghan

Society President Cyndi Zagieboylo & Chapter President Leon LeBuffe

Melissa Glasser, William Sherak, Barbra NeinsteinByron Allen, Jennifer Lucas, Michael Bolton

Photos © A

lex J. berliner/AbIm

ages


50,000 MILES!


In September, 217 walkers, 90 crew members and hundreds of volunteers celebrated the 10th anniversary of Challenge Walk MS and raised $969,811 for MS.

54 of the participants have MS, and ten are 10-Year Sole Survivors (participating in all 10 events). Thank you to all of our very generous sponsors, participants and volunteers, especially our top fundraisers and teams.

2011 Elite Feet 1. Anne Allen $56,360 2. Melissa Glasser $42,540 3. Kathy Stimson $30,515 4. Bill Bisch $16,000 5. Linda Milson $10,664 6. Brian Grey $10,450 7. Dan Glasser $10,343

Mission Possible Award Level $75,000+ • Hurt SO Good!! Robyn Bjorklund $102,059 Gold Award Level $50,000-$74,999 • NorCal StreetWalkers

w/ Good Carma Colleen Brown $71,050 • Team Momentum Chris Serocke $69,150 • The Fireflies! Melissa Glasser $64,222 • Walking Wine-rs Kellie Marsh $53,398

For a complete list of all of our fantastic top fundraisers and teams, please visit myMSchallenge.com.

In the last ten years, our Challenge Walk MS participants have journeyed 50,000 miles closer toward a cure, and raised over $9 million!

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Bike MS: Vegas ChallengeAs we go to print on this newsletter, 275 cyclists just completed the 2011 Bike MS: Vegas Challenge and have raised nearly $130,000. Look for a complete wrap-up in our next issue.

bIKE MS bREAKS RECORDSThank you to all of our 2011 Bike MS: Coastal Challenge cyclists, volunteers and sponsors! Together, you helped us raise a record-breaking $1.1 million!

Nearly 1,000 cyclists rode 30 – 160 miles on October 1 & 2. The Amazing Race’s Phil Keoghan, Criminal Minds’ Shemar Moore and KFI’s Terri-Rae Elmer all played a huge part in increasing awareness of this year’s ride and the MS cause. In fact Keoghan said, “It was a fantastic ride, the most fun I have had on an MS ride for sure.” Cyclists enjoyed the incredible views on the new routes and the circus-themed finish festival.

Thank you again to our generous sponsors, especially presenting sponsor Relativity Media and Gold Sponsors SoyJoy and the Milken Family Foundation. And a round of applause to all of our incredible fundraisers, especially to our Century Club and Elite Teams (view a complete list at bikeMSsocal.org). It was a fierce battle for the top spots.

Titanium Teams Rowdy Riders $153,904 KFI Bike Team $148,005 NOW-MS Society Cynergy Team $77,929

Top Fundraisers Terri-Rae Elmer $145,535 David Weise $54,395 Traci Engelman $28,053 Gregory Trojan $27,925

bike MS 2012 is set for October 6 & 7. Register today at bikeMSsocal.org or call 310.479.4456!

Cameron Mirren & Shemar Moore

Carol & David Adler

Chain Gang

Eric Engelman with daughter Valentina, Traci Engelman



WALK MSWe officially wrapped up the Walk MS 2011 season with a fantastic Halloween-themed Walk MS: Bakersfield event on October 22nd. And what a year it was! • 14 unique sites • 1,145 incredible teams • 2,000 dedicated volunteers • 19,000 enthusiastic participants

(our biggest turnout ever!) • $2.5 million raised!

Thank you to all of our Walk MS participants, volunteers, team members and captains, and generous sponsors for a spectacular Walk MS 2011! We’re ready to top these incredible stats in 2012. We can’t do it without YOU. Join us.

Every step. Every person. Every second spent and dollar raised. They all add up to an experience unlike any other: Walk MS.

This is our time to unite and stand strong. Register now, together we will change lives.

Register today as a participant or volunteer at one of our 15 Walk MS sites throughout Southern California and Nevada!

WalkToEndMS.org 1.800.344.4867

“Walk MS means determination, courage & hope.”

CALIFORNIA

04.15.12

Greater Los Angeles Pasadena Rose Bowl

04.21.12

Conejo Valley Conejo Creek Park

Fresno Woodward Park

Desert Cities Palm Desert Civic Center Park

San Luis Obispo Mission Plaza

04.28.12

Antelope Valley Lancaster Marketplace

Inland Empire Quakes Stadium

Long Beach Belmont Pool

S.W. Riverside County Town Square Park, Murrieta

05.05.12

Big Bear Alpine Pedal Path

Santa Barbara Leadbetter Beach

10.27.12

Bakersfield Yokuts Park

NEVADA

05.05.12

Las Vegas Town Square

Reno/Sparks Idlewild Park Terrace

09.22.12

South Lake Tahoe Camp Richardson

Walk MS 2012

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MS updates & Walk MS Kick-Offs

Learn from an MS expert about the latest and greatest in MS research, treatments and symptom management and about what’s in store for Walk MS 2012.

Conejo Valley February 11, 2012 Featuring Dr. Nancy Sicotte, Director of the MS Program at Cedars-Sinai

Fresno January 28, 1012 Featuring Jong-Mi Lee, NP the Nurse Practitioner for the Multiple Sclerosis Center at Stanford University

Las Vegas March date TBD Featuring Dr. Timothy West, Director of the MS Program at the Cleveland Clinic Lou Ruvo Center for Brain Health; Dr. Barbara Giesser, Clinical Professor of Neurology and Clinical Director of the MS Program at UCLA; and Dr. Gabriela Gregory, Medical Director for MS Services at Sunrise Health.

Long beach February date TBD Featuring Dr. Mark Morrow, Chairman of Neurology at Harbor-UCLA

Palm Desert February date TBD Featuring Dr. Leslie Weiner, Medical Director, MS Comprehensive Care Center & Research Group at the Keck School of Medicine at USC

Reno February date TBD Featuring Dr. Timothy West, Director of the MS Program at the Cleveland Clinic Lou Ruvo Center for Brain Health

Santa barbara February 12, 2012 Featuring Dr. Nancy Sicotte, Director of the MS Program at Cedars-Sinai

Also watch for programs coming soon in upland and Lancaster.

“Walk MS means determination, courage & hope.”

Thank you to our sponsor


SPECIAL EVENTS

DIy FuNDRAISINGDo It Yourself Fundraising is a chance for people to raise awareness and critical funds for the MS Movement in new and creative ways. Activities can include golf tournaments, dinner parties, bake sales, simply asking your friends, and more!

Our new Web site includes helpful resources to help you kick off a Do It Yourself activity and learn from others who are hosting their own. Visit DoItYourSelfMS.org or call Debra Gruen at 310.479.4456 to get started today.

Need a little inspiration? Here are just a few of the creative fundraisers that volunteers have organized recently:

Halloween Adventure—This Halloween season, 15 Halloween Adventure Superstores partnered with our Chapter to raise money for MS and awareness of the disease. Store employees wore MS= buttons, sold

jack-o-lantern pin-ups that asked what “MS =” to customers and asked for contributions. They raised nearly $30,000. Thank you to Julie & Len Goldman and the Halloween Adventure staff for your generous support.

1st Annual Duel at the Dunes Golf Tournament —was held on October 15, 2011 in Nipomo, CA and raised $22,369. Congratulations to Committee Chairman Robert Stiles on this successful golf event.

Spearmint Rhino Charity Golf Tournament—held its 5th annual golf tournament on October 17th at in Corona, CA. They have been raising money for the MS Society for the past 5 years. Thanks to Dena Hernandez and her staff for raising $15,000 this year,

and for their hard work and generous support over the last five years.

SMG Real Estate Brokerage 8th Annual Charity Golf Tournament—on September 30, 2011 in Las Vegas, NV, raised $7,735 for the Chapter.

Lights of Tanea—This incredible light show, synchronized to holiday music runs in Reno, NV November 25 – December 31, and raises money and MS awareness. Last season, they raised nearly $5,000. December 10th is MS Awareness Night.

Dream Cruise Car Show—Thank you to Terry Beardsley for her continuing efforts to raise money to support the MS Society. This successful car show raised $4,000.

“Wailing Winemakers” Karaoke—Thanks to Ortman Family Wines for organizing this charity winery vs. winery karaoke, wine tasting and raffle event that raised $2,000.

Friendship Bracelets—Las Vegas teens (left to right) Kaitlyn Leedom, MacKenzie McDermott and Madison McDermott sold 1,000 friendship bracelets to their schoolmates to raise money for MS and awareness of the disease which affects the McDermotts’ dad.

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Tracy Austin & John Austin presented the 4th annual Serve It Up to End MS at the famed Jack Kramer Club on October 15th. This popular tennis event hosted by Ojakian Tennis, Inc. and co-chaired by Chris Ojakian & Iran Daniel had one of the biggest turnouts to date and raised $41,000.

Wayne Bryan returned as emcee, and Anand Armitraj, Lindsay Davenport, Cristian de la Fuente, Donna Mills, Esai Morales, Pam Shriver and Alan Thicke were just a few of the many famous faces who coached and played alongside participants in the tennis clinics, Team Tennis Tournament and official Celebrity Pro-Am tournament. Attendees also enjoyed great food, auctions and a cocktail party.

Charlie Alfano of Mercedes-Benz South Bay received this year's Power of Performance award for partnering with Serve It Up organizers to raise MS awareness and grow this event to raise more funds for the MS community. Mercedes provided goodie bags and offered all participants free Nike tennis shoes to anyone who came to their shop

for a test drive. Plus, four participants — two at random drawing and each winner of the ProAm — won a trip to the Fairmont Scottsdale Princess in Scottsdale, AZ, where they competed in the Mercedes-Benz Western Sectional for a chance to win a VIP trip to the 2012 US Open.

Thank you to our many generous sponsors, especially the Jack Kramer Club, Mercedes-Benz of South Bay, and Raymond Weil. And, huge thanks again to Chris Ojakian, Iran Daniel, Tracy Austin, John Austin, Bruce Ostermann and the entire volunteer committee for organizing such a fun and memorable event.

RACE TO STOP MS

SERVE IT uP

Runners, marathoners and distance athletes of all types…join the Race to Stop MS team. Create a world free of MS while pushing your own personal limits.Join our Race team at the Los Angeles Marathon on March 18, 2012. Or you may pick any marathon, triathlon, 5k, 10k, or athletic event of your choice to compete in anywhere in the world, and still be part of the team.

Once you join the team, we will give you tips, tricks, and an online fundraising center to support you. You'll have your own personal fundraising Web

page. All athletes who raise $500 will receive an MS hat and at $1,000 will earn an MS sweatshirt. The training part is up to you, but we have created some training tips and hints to help you along the way.

Call Francine Biton at 800.344.4867 or 310.479.4456 to learn more or to get started.

Chris Ojakian and Iran Daniel


PROGRAMS

SCHOLARSHIPS STuDENTSIn 2006, the National MS Society, Southern California & Nevada Chapter established a scholarship program to help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. Since the program’s inception, the Chapter has changed the quality of life for 107 qualified students by awarding nearly $200,000 in scholarships to expand their educational opportunities.

This year, with an initial gift of $25,000 and an annual pledge of $25,000 for the next several years, the Brutocao family graciously established “The Leonard J. and Martha J. Brutocao Family Scholarship Fund,” which allows the Chapter to offer a four-year renewable scholarship to the top two candidates each year. The Chapter wishes to thank the Brutocao family for their relentless support of the National MS Society, and helping make dreams come true for those students who have been affected by MS.

Scholarship applications for 2012 awards are now being accepted through January 13, 2012.

Scholars receive notice in May 2012. For detailed guidelines and application information for the 2012 program, please visit nationalMSsociety.org/CALscholarships.

If you are interested in learning more about making a contribution to our scholars, contact Kate Mcintosh, Vice President of Development at 800.344.4867 or 310.479.4456.

Brittany Wyre2011 Brutocao

Scholarship Recipient Daughter of mother with MS

Brooke Renna2011 Brutocao

Scholarship RecipientDiagnosed with MS in 2009

yPGI am privileged to be a member of our Chapter’s Young Professionals Group (YPG). What is YPG, you ask?

Founded in 2009, YPG is a group of men and women who want to advocate that MS affects the younger generation. YPG’s goal was to become

a force to promote awareness of MS and how it affects people in their 20s and 30s who want to push through their diagnosis and still live full lives. Hope, support and awareness are our key messages

at our social mixers and educational programs, and through our Walk MS and Bike MS teams.

We encourage everyone — whether you have MS or care about someone with MS — to join the Young Professionals Group, and show that we can do something about MS now. The strength of our voice comes from the strength of our members!

To sign up and learn more about our upcoming social and educational events, please email [email protected] We look forward to seeing you at future events.

Sincerely, Reina Magpale

Reina Magpale

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ProgramsConnection

December • January • February

Emotional WellnessA series of free teleconferences

Join one or more of these teleconference wellness programs from the comfort of your own home. Life coach and psychotherapist Catherine Freemire, LCSW leads the discussion on these exciting topics. Please note: each monthly topic has two separate call times and dates, allowing you to choose a time and date that works best for your schedule. Each monthly call is exactly the same so you only need to register for one date/time per topic.

Call 800.344.4867 or visit nationalMSsociety.org/CALcalendar to register. You must pre-register to receive the dial-in information.

DecemberSelf-Defeating Thinking: How to Conquer ItTuesday, December 6, 2:00 – 3:00 pm ~ or ~ Tuesday, December 13, 12:00 – 1:00 pmWe all periodically struggle with critical, negative

and self-defeating thinking that causes hopelessness about change. We then, unintentionally, tend to act in ways that prove our self-defeating thinking. Learn about the most common negative thought patterns and ways to conquer them to open up new possibilities for yourself.

JanuaryCreating a balanced LifeTuesday, January 10, 3:00 – 4:00 pm~ or ~ Tuesday, January 17, 12:00 – 1:00 pmDoes your life feel balanced? If not, do you yearn for that feeling? Join this workshop to take a “Life-Balance Inventory” and discover the next steps for creating a balanced life.

FebruaryAddressing unfinished businessTuesday, February 14, 2:00 – 3:00 pm~ or ~ Tuesday, February 21, 12:00 – 1:00 pmMany of us have things hanging over us which feel unfinished, both emotionally and concretely. Learn to identify the unfinished business which is holding you back from inner peace, and how to either let go or “finish the business.”

Sign me up!

800.344.4867

Visit nationalMSsociety.org/CALcalendar


Free From FallsStudies indicate that falls are quite common among people with MS and are often associated with injuries and negative impact on quality of life.

Free From Falls—a new 8-week fall prevention program—is designed for people living with

MS who are ambulatory but who may be at risk for falling. Learn about: fall risks, tips and strategies to reduce risk for falling and exercises to enhance balance and safety. A supportive group atmosphere and expert instructors will help each participant develop a personal plan to maximize safety.

Each week’s 2-hour program will have two parts; a discussion component focused on awareness of issues related to falls and an exercise component directed to improving postural alignment, balance, endurance and mobility.

Through this course, participants will:

• Increase awareness of the prevalence of falls

among people with MS and the risk factors that may contribute to falls.

• Identify strategies they can employ to prevent falls and develop a fall prevention action plan.

• Engage in and develop a home fitness plan that addresses balance, endurance, and strength, aimed at reducing fall risk.

• Increase their confidence in minimizing fall risk and in managing falls if they do occur.

• Identify additional community resources to implement a fall prevention action plan

Call today to learn more about this program and determine if it is right for you.

Casa Colina Center for Rehabilitation, Pomona 8 Tuesdays, starting January 17th, 5:30 – 8:00 pm Contact Julia at 310.479.4456 to register.

HealthSouth Bakersfield Rehabilitation Hospital 8 Thursdays, starting January 19th, 1:00 – 3:00 pm Contact Kim at 661.321.9512 to register.

Eisenhower Medical Center, Rancho Mirage 8 Wednesdays, starting January 11th 11:00 am – 1:00 pm Contact Suellen at 760.776.5740 to register.

Virtual book ClubIf you love to read and enjoy discussing books with other book lovers, join the MS Book Club!

Book club meetings take place every other month via conference call. Group members are asked to read the selection before the meetings. Please call Tiffany Jordan at 800.344.4867 to sign up and receive the dial-in number.

You may also call Tiffany to request the club’s selection from our lending library. Paperback copies or the book on CD are both available.

The next books we’ll read and meeting dates are:

Wednesday, January 18, 12:00 – 1:00 pm The Awakening by Kate Chopin

Wednesday, March 21, 12:00 – 1:00 pmThe Commoner by John Burnham Schwartz

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NEW - Telephone Group

At-home teleconference group 3rd Wednesday, 1:00 pm Toll-free dial-in number: 1-888-346-3659, entry code 2713#

Los Angeles County Antelope Valley Call Colleen at 661.225.9826 or [email protected]

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

Central LA 4th Saturday, noon, Bilbrew Library Call Alva at 323.233.5413

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

Glendora 2nd and 4th Saturdays, 10:00 am, Glendora Library Contact JJ at 626.253.5043 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

Monrovia 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 Linda at 661.297.3040 or [email protected]

South Bay/Harbor City 2nd Tuesday, 1:00 pm, North Torrance 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]

Do you ever wish you could talk with others who understand what it’s like to live with MS and the challenges the disease brings?

Community 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.

Connect with others...


West Covina 2nd & 4th Wednesdays, 11:00 am Senior Center North Building Call Tadd at 626.962.7909 or [email protected]

West LA Last Monday, 6:30 pm, National MS Society Contact Nancy at 310.827.5714 or [email protected]

West LA – Men’s Group 3rd Tuesday, 6:00 pm, National MS Society Call Larry at 310.423.3425

West Hills 1st Thursday, 7:00 pm First United Methodist Church Call Mary Ann at 310.479.4456

Woodland Hills - A Wholeness Approach to Living Well with MS last Monday, 10:00 am Call Carolyn at 818.348.6628 or

Linda at 818.989.6044 before attending.

Channel IslandsArroyo Grande 2nd Tuesday, 6:00 pm, United Methodist Church Call Ellen at 805.343.6094 or [email protected]

Lompoc Call Devin at 805.772.2046 for details

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

Ojai 2nd Thursday, 7:00 pm Oak View Community Center or 4th Tuesday, 12:45 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 Devin at 805.772.2046

Simi Valley 4th Thursday, 11:00 am Sunrise Christian Fellowship Church Call Dennis at 805.584.2526

Ventura Last Friday, 11:30 am, Carrow’s

Call Vincy at 805.340.9627 or [email protected]

Inland Empire/Coachella Valley Montclair 1st Saturday, 10:00 am Montclair Community Center Call Ginny at 909.981.7035 or [email protected]

Palm Desert 2nd Wednesday, 6:00 pm, Denny’s Restaurant Call Suellen at 760.776.5740

Palm Desert 2nd Thursday, 10:00 am, Denny’s Restaurant Call Richard at 760.899.4174

Rancho Cucamonga - Moms with MS 3rd Tuesday, 10:00 am Rancho Cucamonga Resource Center Call AnaMaria at 909.463.0334 or Kim at 909.904.0352

Riverside 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, Trinity Lutheran Church Call Denise at 951.519.4410

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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

Nevada Henderson Oasis group 1st Saturday, 11:00 am, Health South Henderson Call Ed at 702.490.6217 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 MS Caregivers group 2nd Tuesday, 5:30 pm, Cleveland Clinic Lou Ruvo Center for Brain Health Call Donna at 702.483.6035

Mesquite 1st Thursday, 12:00 pm, Virgin Valley Home Care Call Erica at 702.346.7565

Reno Last Thursday, 6:00 pm, Renown Rehab Facility Call Diane at 775.358.3320

Reno “Invincibles” group National MS Society Call Russ at 775.425.2876

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 Valley

Bakersfield – African American Group Call Kim at 661.321.9512

Bakersfield 1st Thursday, 7:00 pm Health South Rehab Hospital Call Carol at 661.363.9747

Bakersfield 2nd Wednesday, noon or 4th Wednesday, 9:30 am Lorene’s Coffee Shop Call Mary at 661.368.2910

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

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

Fresno 1st Monday, 7:00 pm San Joaquin Valley Rehab Cafeteria Call Karen at 559.431.4570

Hanford -- NEW day/location! 1st Thursday, 10:00 am, First Christian Church Call Barbara at 559.584.1903 or Debra at 559.585.8054

Tehachapi - NEW 2nd Monday, 4:00 pm, Tehachapi Moose Lodge Call Linda at 661.822.7440 or [email protected]

Visalia2nd Saturday, 10:00 am, Call Jim at 559.734.7576or Sandra at 559.936.9312.

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

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 869 E. Foothill Blvd., Suite I Upland, CA 91786 909.949.1363

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., Suite K-225 Reno, NV 89502 775.329.7180

Southern Nevada 5463 S. Durango Drive Suite D-115 Las Vegas, NV 89113 702.736.1478

STAy CONNECTED

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Documents

MS Connection winter 2011 issue