MS Connection Spring 2015 by Marni Deckter

spring 2015

Southern California & Nevada Chapter

MS Connection Newsletter

h i lt fou n daon donate tion m i llio s $2.1 n resear to m s ch! pa

challenge accepted challenge walk ms 2015 golden circle

g e 10

page 8 page 12 - 13

INSIDE 04 THIS ISSUE

research

special events

programs connection

self-help groups

MS connection: spring 2015

letter from the board chair

living your best life Living well with MS requires you to be the driving force in your health and wellness. We’re here to help. If your New Year’s resolutions have taken a back seat, Spring offers you the opportunity to take charge and get connected with others.

The Society’s promise around research is clear: stop disease progression, restore what’s been lost, and end ms forever. addressing the challenges of everyone affected by ms requires a similar focus and promise.

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

Spring also marks the beginning of our annual fundraising event season and how you engage truly matters. Whether you connect: as a participant in Walk MS, Bike MS or MuckFest, as a stellar fundraiser who is unable to directly participate but rallies their personal community to raise funds to help people with MS live their best lives, or as a volunteer who offers unparalleled support; or as donor who is connected to MS because of someone you love—all of the ways we’re connecting make a difference. Together, we make the MS community a vibrant, passionate, and hopeful place. For the last 32 years, part of every single dollar raised from events has helped people overcome the daily challenges of living with MS. Another portion of these funds has furthered research into stopping MS progression, restoring function that has been lost, and ending MS forever. When we launched our first event, there were no disease modifying drugs. Today there are twelve. How you contribute to the mission (by fundraising for special events, page 7) or make an impact (by lending your voice to become an MS Activist, page 6) is up to you. Just as MS is different for every person, there is a different way for each of us to connect and move closer to a world free of MS. I know we will get there faster and with greater impact when we do it together. Take action this Spring to live your best life. Warm regards, Kim Phillips, Board Chair

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

stay connected! 4th of july at the hollywood bowl

Get the latest news in MS research, upcoming events, advocacy milestones, and more when you sign up to receive Society emails. Simply visit nationalMSsociety.org/ signup and choose your email preferences. You can also join our online community, MSconnection.org and connect with others who care about MS. Join discussions, read articles from the MS blog, and stay connected!

special announcement As part of the Society’s efforts to become a more unified organization, we began the process of becoming a single entity by dissolving the corporate status of a separately incorporated chapter. In the Annual Meeting on January 31, 2015, a vote was held and approved on the dissolution of the separately incorporated entity for the Southern California & Nevada Chapter. This change will not impact how we serve the needs of individuals affected by MS. The chapter will continue to exist and operate in exactly the same way.

National Multiple Sclerosis Society Southern California & Nevada Chapter 5150 W. Goldleaf Circle., Ste. 400 Los Angeles, CA 90056 1-800-344-4867 Chair: Kim Phillips Editor: Emily Hazlett © 2015 National MS Society, Southern California & Nevada Chapter; Published Quarterly—Spring 2015

reserve your tickets today! We’re celebrating Independence Day at the Hollywood Bowl on July 4, 2015. Join us for an evening of great music by Smokey Robinson and one of the most spectacular fireworks displays in Southern California. Ticket prices vary depending on ticket level. For more information, please call Tiffany Jordan at 310479-4456 ext. 66130.

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

4 research

research leads in MS Significant research progress was made in 2014, offering new leads that are driving efforts to stop multiple sclerosis, restore lost function, and end MS forever. Here are some highlights:

STOPPING MS • A National MS Society-funded team shed new light on immune cells known as macrophages, discovering a way to tell the difference between good and bad types of these immune cells in mice with an MS-like disease. This research opens up possibilities for therapies that target bad cells and spare good cells. • The U.S. Food and Drug Administration approved Plegridy (peginterferon beta-1a, Biogen Idec) and Lemtrada (alemtuzumab, Genzyme, a Sanofi Company) for people with relapsing forms of MS. This means there are now 12 disease-modifying treatment options for those with the most common form of MS. • In a multicenter study, African Americans with MS were found to have more visual impairment and faster thinning of the nerve fibers in the back of the eye than Caucasians with MS. • Researchers in the U.K. found that for every year that passed after a person with MS stopped smoking, the risk for progression was reduced by as much as five percent.

MS connection: spring 2015

For people with progressive MS, a number of studies provided promising results: • A phase 2, placebo-controlled clinical trial of high-dose oral simvastatin (a medication used for high cholesterol) involving 140 people with secondaryprogressive MS suggested that this pill was able to slow the rate of brain tissue loss over two years. • An international team funded by the Society found that levels of vitamin D in serum administered early in the course of MS may predict later disease activity and progression. • T he International Progressive MS Alliance awarded its first round of 22 research grants – the start of an ambitious program that will invest at least $30 million over six years. • The Society is funding clinical trials of nervous system-protecting approaches, including a phase 2 trial of ibudilast in 250 people with progressive MS. • Innate Immunotherapeutics leveraged Society commercial seed funding to launch a clinical trial of a treatment for progressive MS. • Society-funded researchers at the University of Alabama at Birmingham found that weakness was improved and brain tissue increased significantly in 20 people with progressive MS under constraint-induced movement therapy (immobilizing a favored arm, forcing the weaker arm to do exercises and skilled movements). A larger trial is underway.

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

RESTORING LOST FUNCTION

ENDING MS FOREVER

A number of potential MS therapies that hold the possibility of myelin repair moved forward in clinical trials, including an approach that tested the ability of an individual’s own mesenchymal stem cells to inhibit immune mechanisms and augment intrinsic tissue repair processes when infused into the veins of people with relapsing forms of MS.

• In studies involving over 80,000 people, the International MS Genetics Consortium identified more than 159 genetic variations related to MS.

In addition, there were positive results from a number of lifestyle and wellness-related studies, as follows: • A clinical trial showed strong evidence that a specific type of memory training improves learning in people with MS and benefits other aspects of quality of life. Additionally, a pilot study revealed that clinical and MRI improvements were maintained six months after training ended. • In a preliminary study of a salsa dance program for people with MS, researchers found improvements in gait and balance even three months after the 4-week program ended. The Society is now funding a larger, longer study that may lead to the use of dance as physical therapy for MS. • The Society convened a Wellness Strategy Meeting to identify gaps in knowledge and programming and to map out next steps for how these gaps might best be addressed. Attendees included leaders in the fields of diet, exercise and psychology, as well as individuals who also directly live with MS,

• Collaborators at Yale, MIT, Harvard and elsewhere reported a new approach to understanding how subtle changes in genes may lead to the risk of developing MS and other immune diseases. • Researchers in Sweden and California showed that adolescent obesity increased the risk for MS, and that this risk increased substantially in those with specific immune genes. • Investigators found that those who reported taking cod liver oil at ages 13-18 had nearly half the risk of developing MS compared to those who never took cod liver oil or took it at other ages. n To keep up to date on the latest MS research, visit www.nationalMSsociety. org/research or sign up for MS eNEWS at www.nationalMSsociety.org/signup.

our commitment to research Our annual research investment continues to grow. In 2014, we funded $50.6 million in research, and have committed $52.3 million in 2015! Our goal to reach $250 million in research funding will be accomplished by 2016. What are our priorities in 2015? We continue to focus on finding solutions for people with progressive MS; restoring and repairing function; and understanding genetic and environmental factors in MS.

MS connection: spring 2015

advocate for change

Nevada MS Activists take center stage Ten leading Nevada MS activists representing the National MS Society conducted a “Breakfast and Learn” at the State Capitol on Friday, March 13, 2015. They met with six key elected officials and 24 legislative staff. The discussion centered on the activists’ concerns about comprehensive and quality health coverage, long-term care services, and access to prescription drugs.

Get Involved!

The Society will be supporting two bills focused on network adequacy. The first bill will ensure that health plans develop and maintain provider networks ensuring coverage and the second will focus on access to quality MS care. During our time in Nevada, we discovered as many as 10 legislative offices have a direct connection to someone living with MS. Activists are excited to enroll their elected officials to support legislation requiring certain insurers issuing policies of health insurance and health care plans which provide coverage for prescription drugs and the Commissioner of Insurance to make formularies and other information available online.

Learn about tools and resources to influence and effect real change in public policy. Register at www.nationalMSsociety.org/advocacy101.

All ten MS activists sat with legislators on the floor of both the State Senate and Assembly and each were recognized and received a rousing of applause from the members of both Chambers. This is a big year at the state legislature and we encourage you to join our efforts! n

Join the MS Activist Network by visiting www.nationalMSsociety.org/advocacy. You can also email Public Policy Director Stewart Ferry at stewart.ferry@nmss.org and follow him on Twitter at @CA_MSactivists.

advocacy 101

LEARN HOW YOU CAN ADVOCATE FOR CHANGE

Advocacy 101 WEBINAR

THUR, MAY 14

6:30 pm PST

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

walk ms

creativity calls At the time this issue went to print, thousands of Southern Californians and Nevadans were gearing up for the Spring 2015 Walk MS season. The largest program by attendance and highest fundraising event series for the chapter, Walk MS connects people living with MS and those who care about them. We’ve set our goals high in 2015 and aim to raise $2.5 million. Check out how teams and individuals are using their creativity and resources to help move us closer to that goal: Dawn, team captain of Dawn’s Rockstars, held a Dress Down for MS fundraising day at her company, iHeartMedia in Las Vegas. Employees opted to make a donation for the opportunity to dress casually and wear orange for MS Awareness Week! Jillian E., team captain of Team Jillian, decided to challenge her team to have 100% fundraising activation. She set a new requirement for her team of over 100 people to raise any amount in their personal fundraising account in order to earn a team shirt. Joe G., team captain of Team Jersey Shore, busted out the “orange” carpet in Hollywood for a star-studded fundraiser during MS Awareness Week. While celebrities spoke to the press, guests enjoyed a silent auction, raffle, and great music.

register today! visit walkms.org April 11, 2015 Conejo Valley Desert Cities Las Vegas San Luis Obispo April 18, 2015 Inland Empire April 19, 2015 Greater Los Angeles April 25, 2015 Antelope Valley Fresno May 2, 2015 Big Bear Santa Barbara Reno/Sparks May 3, 2015 Long Beach

8 challenge walk ms

for me & my dad My name is Susan O’Connor and I was diagnosed with MS in 1999 at age 30. I’m so very fortunate to be able to say I’ve been living well thus far, leading a normal, very active lifestyle and being a mom to two young daughters, Sabrina (11) and Tabitha (6). Although MS has been “good” to me, I have experienced loss and devastation along my journey. Just five months after my diagnosis, I learned I would share my unpredictable future with one of the most important and inspirational people in my life -- my father. Dad and I fought and lived with MS together for just six short years, when in January 2007, he passed away after succumbing to pneumonia. Dad’s untimely passing gave me a new perspective about life with MS and helped fuel my passion to make a difference. I formed TEAM DAD at Walk MS, became an advocate for my MS drug manufacturer, joined the National MS Society’s Educational Scholarship Committee, and more. My long journey full of milestones was about to peak with my most personal challenge yet in my life with MS...Challenge Walk MS 2014. Last summer, my husband, Chuck, and I heard a presentation from NMSS staff member Debra Gruen about Challenge Walk MS, a three day, 50 mile walk from Carlsbad to San Diego. As Deb spoke, my heart began to race; every hair was standing up with goose-bumps. My passion and enthusiasm to help end MS forever by walking 50 miles was lurching me forward…I must do it THIS YEAR! I thought to myself, “I’m well today, I have the strength, courage and focus this year; I may not be so lucky next year.” With the incredible support and willingness of

MS connection: spring 2015

my husband, Chuck, and daughter, Sabrina, wanting to walk by my side, I soon found my fundraising goal increase threefold. I had a BIG job ahead of me! I began fundraising in June, just three short months before Challenge Walk, and with lots of enthusiasm, motivation, optimism and hope, I exceeded my goal by almost $2,000! Yes! I was proud and humbled by the outpouring of my community and “framily” (friends and family) support. I had persevered and earned my gift of participating in the longest walk of my life. Before I knew it, I was in San Diego to pursue a challenge that I thought only one year earlier, was an impossible feat. When all was said and done, I had successfully crossed the finish line after walking 50 miles for MS. I was hooked! I immediately signed on for Challenge Walk MS 2015 (September 25 - 27) and I can’t wait! Meeting inspirational people, hearing inspirational stories, and helping others to lead inspirational lives is why I choose to return year after year. I will return as a “sole survivor” for as long as my MS journey allows and I will continue to hope and fundraise for a future free of MS. n

Challenge Walk MS September 25 - 27, 2015 Learn more and register today at www.myMSchallenge.com!

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

bike ms

in the hot seat We sat down with some of our returning Bike MS participants and team captains to get the details about why they participate year after year in Bike MS Coastal Challenge: Santa Monica to Santa Barbara.

what inspired you to start a team? “My brother, Eric, was diagnosed with MS about 11 years ago. It was a complete shock to us all. He was 23 years old and completely healthy, or so we thought. The diagnosis answered many questions but also presented us with many more. It is a scary diagnosis, but MS is one of the few demyelinating diseases that has seen HUGE strides in medical progress in the past few years. I am so hopeful that one of these dollars that we raise will be the one that helps fund the cure for this debilitating disease. After Eric’s diagnosis, I bought a bike and started my team, the Rowdy Riders. I fundraise for MS because my brother Eric is passionate about seeing the world and I want to make sure that he and others suffering from MS will be mobile and able to pursue their dreams.”

What is your connection to MS? “My mom was diagnosed with MS when I was in 5th grade. We used to participate in the Carlsbad Walk MS when I was growing up, with my Girl Scout troop volunteering at aid stations. Eventually, my parents stopped going, and then they stopped fundraising and it dropped off of the radar. In 2013, I decided to pick back up the torch and signed up for Bike MS Coastal Challenge. I signed up for my first Century ride by doing that Bike MS event. Every year since, I have decided to up the ante and do longer and longer total mileage over the weekend (still starting with a century on the first day).” -- Chelsea McBride, Bike MS Leadership Team Secretary

Why is it important to fundraise through events like bike ms? “ I am supporting MS fundraising in hopes or in the knowledge that enough funding will enable medical researchers to eliminate this disease. I was alerted to MS by the fact that both my niece and nephew have it, but with enough research their children and friends’ children will not have multiple sclerosis. They will have the joy of unlimited (or normal) physical movement.”

-- Traci Engelman, Top Fundraiser & team captain of Rowdy Riders

Bike M Coastal Challenge: anta Monica to anta Barbara

october 10 & 11, 2015 » PRESENTED BY register today! bikemssocal.org

-- Ella Zarky, Bike MS Legacy Club Member (6 years)

MS connection: spring 2015

giving

HILTON FOUNDATION DONATES $2.1 MILLION TO MS RESEARCH We are thrilled to announce that the Conrad N. Hilton Foundation has just awarded the National MS Society $2,100,000 in research grants to support two very different research projects: the first aimed at helping people who are living today with progressive MS; and the second targeting new innovative therapies and diagnostic strategies.

MS Adult Day Programs Study Multiple Sclerosis Adult Day Programs (MSADPs) represent a promising long-term care service that can help participants with progressive MS to maintain their quality of life; improve social, emotional and physical wellness; provide respite for family caregivers; and possibly reduce health care utilization and long-term health care costs. Benefits of participating in these programs, such as the REACH to Achieve program at The Marilyn Hilton MS Achievement Center at UCLA, have been reported anecdotally, but controlled evaluation studies are lacking. In order to make these services more widely available and improve their funding, it is essential to conduct scientifically rigorous and comprehensive cost-benefit studies of the MSADP model.

Such studies will provide the information that policy makers and health care professionals need to make critical decisions that could allow these programs to reach their potential. The Hilton Foundation provided the lead funding to establish The Marilyn Hilton MS Achievement Center at UCLA, which celebrates its 14th anniversary this summer. They continue to generously support the Center so that people with MS in the Greater Los Angeles area have the support they need. The Foundationâ&#x20AC;&#x2122;s new $1 million grant will support this MSADP study; findings will be vital to expansion and quality improvement of these programs nationwide.

Fast Forward As a driving force of MS research to stop MS in its tracks, restore function already lost, and end MS forever, the National MS Society takes a unique, comprehensive approach to our research efforts. Often, the biggest hurdle in moving potential treatments forward is securing the necessary early investments and resources for commercial development. The Society continues to propel promising new therapies by breaking down these barriers to commercial development through Fast Forward, its commercial research program. We drive connections of all the resources necessary to ensure that promising treatments move through the research pipeline.

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

Since its founding in 2007, Fast Forward has deployed over $14 million to 33 therapy and diagnostic development programs. This new $1.1 million grant from the Hilton Foundation will be used to support up to five new projects using aggressive approaches and strategies that will speed the movement of promising treatments from the lab to people with MS. “This is another significant step forward for the National MS Society in our quest to serve and treat people with MS. With these two research investments the Conrad N. Hilton Foundation is once again demonstrating leadership. We are grateful to the Hilton Foundation and Hilton Family,” said James D. Power IV, Chapter Trustee and NOW Cabinet Member. Foundation President & CEO Steve Hilton said, “My dad, Barron Hilton, often said how difficult and demanding it can be for a person with severe MS, even if the family can afford to provide the best medical care available. And, how much more difficult it must be if you can’t afford a lot of help.” Thinking of his mother Marilyn who had MS, he continued, “When someone you love is afflicted with MS it opens your heart to the suffering that others go through, so you feel it’s important to reach out and help others that are going through a similar struggle. And so – we opened our hearts.” n Learn more and stay up-to-date with the latest in MS research news. Visit www. nationalMSsociety.org/research today!

staunch supporters

We are grateful to the foundation and corporate supporters who contributed $2,192,165 in grant awards between December 6, 2014 – February 28, 2015: • $1,100,000 from the Conrad N. Hilton Foundation to support MS research through Fast Forward • $1,000,000 from the Conrad N. Hilton Foundation to support an MS Adult Day Programs Study • $35,000 from the Hurlbut-Johnson Charitable Trusts to support The Marilyn Hilton MS Achievement Center at UCLA • $25,000 from The Wood-Claeyssens Foundation to support the Better Living program for people with MS in Ventura and Santa Barbara counties • $17,500 from Friends of the National Multiple Sclerosis Society in general operating support for the Northern Nevada office • $7,500 from Lockheed Martin’s Aeronautics Employees Reaching Out (AERO) Club to support the Optimal Living with MS series • $2,500 from Biogen Idec and $2,500 to support the Chapter’s Annual Meeting “Fueling Impact in MS Research” • $2,500 from Novartis Pharmaceuticals to support the Chapter’s Annual Meeting “Fueling Impact in MS Research” • $2,165 from the Outhwaite Foundation to procure needed capital equipment for the Chapter’s Channel Islands office n

MS connection: spring 2015

golden circle

Thanks to the generosity of the following donors, more than $1.37 million was contributed to Golden Circle during the 2014 Campaign.

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

patron ($50,000 - $249,999) Sponsor ($10,000 - $49,999)

Anonymous (2) • Bloomingdale’s • John A. Duran, John Amado Duran, Jr. & Austin Ryan Fuentes • Elerding Family Foundation • The Rhoda Goetz Foundation for Multiple Sclerosis, Kevin Goetz • Shirley & Burt Harris Family Foundation • Julie Kaufer & Frank Reddick • Patricia K. Margolis • Pamela & Stanley E. Maron • Nancy Mauro • Sandra Milken • MS Charity Bridge Tournament • Janice & Timur Tecimer, Overton Moore Properties • Andi & Robert Parker • Phi Alpha Kappa Sorority • Karen Ritchie • Conrad Schlum Charitable Trust, Joan & Arnold Seidel • Fern & Bob Seizer • Specialty Family Foundation • The Susanne & Gary Tobey Family Foundation • The Warren/Soden/Hopkins Family Foundation, Bob Warren • Stephen B. Yoken

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

Anonymous (2) • Christopher V. Andersen • Anthem Blue Cross, Pam Kehaly • Jennifer Berkley & Alan Jones • Marla Bradley & Mike Lambert • Claudia Barski & Peter Carian • Samuel De Luca • Julie & Barry Engelman • Sandra & Bernard Fischbach • Elvie & Yale Gieszl • Sam & Rena Given Foundation, Cristine & David Card • Charlotte & Dr. S. Lawrence Jacobs • Tatiana & Todd James • Jaquish & Kenninger Foundation • Linda Lee Lawyer • Pamela & Dr. Andrew Lewin • Cynthia & Michael Malone • Geneva McCaron • Hal A. Mc Vey Trust, Carolyn Bloom • Eugenia Riordan Mulé • Oarsmen Foundation, Dee & George Schuler • Jerome & Faith Pearlman Foundation, Faith Pearlman • Ronald L. Olson Foundation, Joan & Ronald Olson • Eleanor Hutchinson Parker Foundation • The Skynyrd Foundation • C.R. Stevenson Family Foundation, Alice R. & Clinton Stevenson • Louise Laraway Teal Foundation • Linda & Dennis Vaughn • Carrie & Rayne Waller • Frederick R. Weisman Philanthropic Foundation, Billie Weisman • Barbara Wilson & John Phillips • Anne Woodyard • Annette & Gilbert A. Yanuck

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

Anonymous (2) • Joanne Beckwith • Mindy A. & Adam Beechen • Debbie Bolsky • Vicki & Robert Bond • Barbara & Morton Bowman • Judith Bronowski • Buchanan High School MS Bowl • Lynn & Bradley Califf • Eileen & Gary Caris • Cushman & Wakefield • Eileen & Don Fracchia • Donna Ellman Garber • The Gatherer Family Foundation • Ann & Dave Gooding • Lisa & Michael Gragnani • Charlotte & Stanley Kandel • Dr. Alex Krammer • Donald C. & Diane S. Lake Family • Sharon A. & Hal Lampert • Michael J. Lichner • Betsy & Robert Manger • Taviah & David Mayman • Julie & James D. Power, IV • Rope for MS, Tara Maxeiner • Nancy & Mark Samuels • Jane & Charles Schneider • Sheryl & Barry K. Schwartz • Cara Shaw • Marcia & Mark J. Smith • Irene V. Steinman • Claudette L. & Henry L. Taylor, Jr. • Gail & John Thomason • Jane & Lester E. Trachman • Terry Weeks • Melissa & Robert Weiler • Whitney Young Children’s Foundation

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

Anonymous (4) • Fotini & Steve Alfieris • Terry Bass • Bonnie & Richard Bell • Lewis Black • Deborah Bradley • Camilla & Arnold Bramlett • Kappy K. Bristol & James D. Bristol • Nicholas Bruyer • Margaret Budd • Julia & James Burge • Nina Byers • Sherie & Stephen

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

Carroll • Cynthia Glazar & Mark Cendrowski • Louis & Florence Cohen Fund, David Clark • Alfred Contarino • The Corgel Family • Colonel John S. Costello • Karen & Ryan Craig • Deckers Outdoor, Frankie & Angel Martinez • Anita DeFrantz • Benjamin Dent • Janet C. Dirks • Dreier Family Foundation • Shelley & Joe Drnek • Gary East • Katherine R. Enright • Tom Erdmann • Betty G. Filippin • Colleen & Ted Friedel • Margaret Gage • Jay Gallagher • Kelly A. Gilmore • Judy & David Goldstein • Edith Grady • Melanie Grisanti & Gordon McLeod • Randall Grossblatt • The Wilbur C. Grosse Trust, Maria Elena Muňoz • Heather & Paul Haaga • Nancy & William Hammond • Eleanor & Jack Harter • Arlene & Richard Havel • Jody Helft-Moss & Dennis Moss • Michael Hencel • Linda G. & Roger H. Howard • Denise & Paul Huether • Lois Ingham, Gary Ingham, Alyson Kroischke & Deanne Hix • Karen & Don Karl • Kevin M. Kelly • Kenneth L. Keltner • Pauline & Samuel Li • Peter Maller • Amy & Michael Mayfield • Dr. Cynthia McGranahan & Lyle Dawn • S. Patrick Mellier • Sue & Ed Meltzer • Irene Mendon • Eileen & Steve Meuris • Sheryl Miller & Dr. Robert Schilling • Daniel Monick • Helena & Judge Richard Neidorf • Claudette Nevins & Benjamin Pick • Debra & David Normington • Barbara A. & Paul T. Norton • Janet Offel & Michael Nebenzahl • Kimberly & Jeff Peterson • Kimberly Phillips & Ross Skinner • Helena Wood Pietro • Joan & Doug Pike • Janet & Wayne Quillin • Pam & Josh Reims • Tatum Robertson • Phyllis Robsham • Strawn Rosenthal • Dr. Loren E. Sanchez • Eduard Sarkisov • Priscilla & Harold Schroeder • Susan Schroeder • Jean B. Seitz • Cynthia & Jeffrey Shaw • Robert Siegel • Joyce & Ben Silverman • Sally & Dr. Robert Smith • Ruth Lynn & Hank Sobel • Susan Steinhauser & Daniel Greenberg • Edward R. Stewart • Karin & Steven Stoller • Bruce Stone • Jayne & Kelly Tien • Evelyn & Jeffrey Tolin • Cynthia A. Torres & Michael V. Gisser • James S. Tyre • Jeanne Usonis • Lorna & Dr. Shelby Wagner • Susan & William Weintraub • Andy Wexler • Mary & Richard Whiting • Diana & Chester Widom • Philip T. Winik • Jane Lee & Larry Winter • Martha B. & Charles C. Wolf • Dr. Michael R. Yeaman • Auda L. Zurcher

We also gratefully acknowledge all of the donors who contributed more than $40,000 to the 2014 Golden Circle campaign with gifts up to $999. Thank You!

Challenge accepted. Challenge met. The 2014 Golden Circle Year End Challenge was an amazing success! We are thrilled to announce that, for the 8th year in a row, Golden Circle donors rose to the challenge posed by the Kenrose Kitchen Table Foundation and the Steve & Caroline Kaufer Family. With the generosity of hundreds of individuals, family foundations and corporations, the Golden Circle campaign met and surpassed the year end goal of $575,000, raising more than $665,000 between 10/1/2014 and 12/31/2014. As a result, the Golden Circle campaign raised more than $1.37 million in 2014! The contributions from this year-end challenge will assist those living with multiple sclerosis and provide hope through research. The Chapter extends its deepest appreciation to the Kenrose Kitchen Table Foundation and the Steve & Caroline Kaufer Family for their passion, leadership and tremendous support to help create a world free of multiple sclerosis. If you are interested in learning more about Golden Circle, please call Elicia Lopez at 310.481.1111.

MS connection: spring 2015

programs connection spring 2015

ms education

dial, listen & learn

management of urinary & sexual complications in ms

RSVP today at nationalMSsociety.org/ telelearning or call 800-344-4867.

upcoming program teleconferences Monday, April 27, 6:30pm - 8:30pm West Los Angeles Self-Help Group Veteranâ&#x20AC;&#x2122;s Memorial Building 4117 Overland Ave, Culver City

Multiple sclerosis affects urinary and sexual function in those living with the disease. Join Dr. Larissa Rodriguez at the West Los Angeles Self-Help Group for this talk that will explain why changes in these functions happen and what you can do to improve the symptoms. Dr. Rodriguez is a Professor of Urology and Gynecology and a Division Director at the University of Southern California. An established clinician and researcher with numerous publications, grants, and awards, she is pursuing multiple laboratory investigations, including the role of stress on urinary symptoms and voiding dysfunction.

Learn more about MS symptoms and management Visit nationalmssociety.org/SymptomsDiagnosis for more information.

sex ed for grownups â&#x20AC;&#x2019; intimacy in ms Tuesday, May 19, 4:00pm Thursday, May 21, 7:00pm

MS can certainly change a romantic relationship. Learn how to maintain or build intimacy now that MS is in the picture from Dr. Timothy Hlavinka, Urology San Antonio and Dr. Linda Mona, VA Long Beach.

gender differences in ms Tuesday, July 21, 4:00pm Thursday, July 23, 7:00pm

Men and women are affected by MS differently. Join Dr. Barbara Giesser and Dr. Rhonda Voskuhl of UCLA, to learn why and how those differences are important.

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

relationship matters Couples living with MS have unique challenges. Explore ways to develop a team approach to living well with MS. This interactive and energetic workshop will focus on enhancing your communication and problem solving skills, renewing commitment in your relationship, and discovering a sense of power over your MS. This romantic getaway weekend includes two days of interactive group activities that will enhance and improve your ability to communicate with each other. During day one, we will discuss the concept of healthy open communication and how these practices can enhance any relationship. Then you will be able to enjoy an overnight stay at a romantic hotel. We will come back together on day two to learn how to put into practice the ideas explored in day one. This workshop is open to any couple in a committed relationship, regardless of marital status. Cost: $100 per couple, includes a Saturday night hotel stay, continental breakfast and lunch on Saturday, and breakfast on Sunday.

Palm Springs, CA Saturday & Sunday, May 16 & 17 Hilton Garden Inn 71-700 Highway 111 Rancho Mirage, CA 92270 Schedule: Saturday, 9:00am - 4:00pm Sunday, 9:00am - 1:00pm If you have any questions, please call Mercy Willard at 310-479-4456.

sign me up! pre-registration required. 22 couples will be chosen via lottery from pre-registrations collected by April 30th. You will be informed via phone if you have been selected the first week of May. Once selected and you accept your invitation to this program, payment must be mailed, faxed or called in (if using a credit card) to reserve your spot.

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

MS connection: spring 2015

SUPPORT SERVICES

Sherak Emergency Fund: Funding for unexpected one-time situations (food, rent, utilities). Official documentation demonstrating proof of emergency is required. Limit: up to $300 within an 18-month period. Durable Medical Equipment: Share of cost for durable medical equipment (wheelchairs, hand rails, etc.). Limit: up to $400/year. Rhoda Goetz Personal Care Fund: • 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. • Chore Service Program: Light housekeeping only for those unable to manage these tasks. Limit: up to $300/year.

MEDICAL CARE

SUPPORT FOR FAMILY MEMBERS

MS Physician Consult program: Funding for one-time consult with an MS specialty neurologist. Must have limited geographic and/ or insurance resources.

Grisanti Respite Fund: Provided through a licensed home care agency for the family member who is a full-time care partner and needs time off. Limit: up to 50 hours/year.

Physical/Occupational/Speech Therapy: Inhome evaluation and five to six follow-up visits for a person who cannot leave home.

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.

Individual Counseling & Telecounseling Sessions: 6–10 visits per year with a licensed therapist who is experienced in MS.

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

self help groups

Connect

Lakewood/Long Beach 3rd Sunday, 1:00 pm, May Boyer Park Call Fran at 562.925.4405

Community Self-Help Groups

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

Los Angeles 3rd Thursday, 6:00 pm, Fairfax Branch Library Call Michael at 213.804.1249 or Allison at 323.876.7606

at-home Telephone Group

Monrovia/Pasadena 2nd Monday, 10:00 am, First Presbyterian Church Call Aynn at 626.303.4343

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

Los Angeles County Antelope Valley 3rd Thursday, 6:30 pm, Location TBD Call Christine at 661.321.9512 Boyle Heights/USC Wellness Center Spanish speaking group 2nd Saturday, 10:00 am, The Wellness Center at the Historic General Hospital Call Carlos at 213.261.3685 Central LA 4th Saturday, 12:00 pm, Bilbrew Library Call Brenda at 310.628.6771 Downey - The Force MS Self-Help Group Thursdays, 10:00 am Rancho Los Amigos Rehabilitation Center Call Staci at 310.603.6853 or 310.918.8977 Downey - Young Professionals Group for people in 20s - 40s. 2nd Saturday, 10:00 am, Rancho Los Amigos Rehabilitation Center. Contact Sarah at 562.401.7622 or Beth at ypg@nmss.org

North Hollywood - Drumming Group Learn a unique way to express yourself. No musical experience needed. 2nd Saturday, 12:00 pm, Remo Drum Center. Call Beth at 818.219.1715 Santa Clarita 2nd Thursday, 6:30 pm, Saint Kateri Catholic Church. Call Eire at 661.297.6887 South Bay/Harbor City 3rd Tuesday, 4:15 pm, Gardena Mayme Dear Library. Call Pattie at 310.769.0694 Tarzana/Northridge – Spanish Speaking Group 2nd Saturday, 9:00 am, Tarzana Community & Cultural Center. Call Maria at 818.370.8073 Tarzana – Let’s Play social group 3rd Saturday, 12:00 pm, Tarzana Community Center. Call Linda at 818.222.7678 West Covina 2nd & 4th Wednesdays, 11:00 am, Senior Center North Building. Call Tadd at 626.962.7909 West LA Last Monday, 6:30 pm, Veteran’s Memorial Building. Contact Susan at archivesusie@aol.com West LA – Men’s Group 3rd Tuesday, 6:00 pm, Fraser Communications Call Larry at 310.926.1641

18 Channel Islands Arroyo Grande 2nd Tuesday, 6:00 pm, United Methodist Church Call Ellen at 805.343.6094 Ojai Valley Wallwalkers Lunch Meeting 4th Tuesday, 12:30 pm, Eggs N Potatoes. Call Donna at 805.646.3750 or Tammy at 805.648.6402

MS connection: spring 2015

Ontario 1st Saturday, 10:00 am, Redeemer Lutheran Christian Church. Call Emily at 909.851.6204 or Kathy at 909.621.3519 Palm Springs 2nd Sunday, 12:00 pm, Billy Reed’s Restaurant Contact Tony at 760.831.6365

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

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

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

Palm Desert 4th Thursday, 11:00 am, Buffalo Wild Wings Call Richard at 760.899.4174

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

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

Ventura Social Group 3rd Thursday, 3:00pm, Panera Bread in Ventura Call Tammy at 805.648.6402

Inland Empire/Coachella Valley Apple Valley/Victorville 3rd Friday, 10:00 am, Senior Select Advocate Apple Bear Center. Call Tammy at 909.792.6518 Hemet 2nd Friday, 10:00 am, Hemet Public Library Call Tammy at 909.792.6518 Lake Arrowhead 1st Friday, 4:00 pm, Location varies Call Joyce at 909.337.7573 Murrieta - So Cal MS Outlaws 4th Wednesday, 10:00 am, Trinity Lutheran Church Call Roxie or Bill at 951.506.3787

Temecula 1st Monday, 10:00 am, Mary Phillips Senior Center. Call Denise at 909.519.4410, Tammy at 909.792-6518, or Jacqueline (Spanish-speaking) at 951.302.3529 Temecula - Men’s Group 4th Monday of every other month at 1:00 pm Location TBD Call Ric at 619.985.5736 Upland Last Wednesday, 10:00 am, Calvary Chapel. Contact Tammy at 909.792.6518 or Denise at 909.519.4410. Yucaipa 3rd Tuesday, 1:00 pm, Good Shepherd Church Call Clare at 909.795.5128 or Tom at 909.795.1717

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

Nevada & Northeastern california Las Vegas/Henderson - Oasis group 1st Saturday, 11:00 am. Call Ed at 702.271.3007 or Jerry at 702.285.6479 Las Vegas - MS Lunch Club Tuesday, May 5, 11:30 am, Los Prados Country Club, Call Darlene at 702.278.4869. Must RSVP. Lunch is $10/person. *As of June 22, MS Lunch Club will move to the 4th Monday, 12:30 pm, Cleveland Clinic, Call Carol at 702.480.1339 Las Vegas - Westside Stories 3rd Wednesday, 6:00 pm, HealthSouth, Call Gaby at 702.328.6989 Loyalton Rural Outreach to Wellness Call Bonni Sue at 530.993.4499 for details 213 Main Street/HWY. 49, Ste. 1 Reno/Sparks 3rd Thursday, 2:00 pm, The Continuum Call Christine at 775.560.1215 for more details Reno/Sparks 3rd Thursday, 10:00 am, N. Nevada Center for Independent Living, Call Mary at 775.772.3404 Truckee 2nd Thursday, 5:30 pm, Tahoe Forest Hospital Cafeteria. Call Rick at 530.550.0654 or Bonni Sue at 530.993.4499

San Joaquin Valley Bakersfield 1st Thursday, 7:00 pm, HealthSouth Rehab Hospital. Call JoAnn at 661.872.1973 Bakersfield - Breakfast & Lunch Groups 2nd Wednesday, noon or 4th Wednesday, 10:00 am Lorene’s Coffee Shop. Call Ron at 661.833.0388 or Sarah at 661.865.6238 Bakersfield - Young Professionals Group 4th Tuesday, 5:30pm Call Christine at 661.321.9512 for details Clovis/Fresno 3rd Saturday, 9:30 am, San Joaquin Rehab Hospital. Call Yolanda at 559.908.4644 or Doris at 559.299.2072 Fresno – Newly Diagnosed/Working Professionals Group Call Cherish at 559.287.3042 for details Fresno – Spanish Speaking Group Call Sharon at 559.579.4096 for details Hanford 1st Saturday, 10:00 am, First Christian Church Call Judy at 559.585.1198 or Debra at 559.585.8054 Tehachapi 2nd Thursday, 5:00 pm, Tehachapi Moose Lodge Optional “Dinner on the Grill” $3.50 & up Call Linda at 661.822.7440 Tehachapi – Wheels in Motion 3rd Tuesday, 10:00 am, Kelcy’s Restaurant Call Linda at 661.822.7440 Visalia 2nd Saturday, 10:00 am, Kaweah Delta Rehab Call Mary Ann at 559.936.3960

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

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

CALIFORNIA OFFICES Channel Islands

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

Inland Empire

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

Kern County

1800 30th Street Suite 105 Bakersfield, CA 93301 661.321.9512

San Joaquin Valley

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

NEVADA OFFICES

September 12, 2015

palisades charter high school

Northern Nevada

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

Southern Nevada

2110 East Flamingo, #203 Las Vegas, NV 89119 702.736.7272