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

winter 2012/2013

National Multiple Sclerosis Society Southern California & Nevada Chapter

Southern California & Nevada Chapter

MS Connection Newsletter

bike ms raises over $1.26 million for ms research & programs Story page 12

INSIDE 04 THIS ISSUE

research

volunteers

events

programs connection

02 letter from the president

MS connection: winter 2012/2013

Thanks to the work of MS activists…

As I look back on 2012, I’m • Medicare will no longer deny services to its beneficiaries who are unable to show that so proud of what we — our they are improving from certain skilled care countless volunteers, fundraisservices, including therapy (more on page 6). ers, activists, donors and staff — have been able to accom- • Nevada was one of 10 states to receive a federal Lifespan Respite grant to enhance statewide plish to support people livsystems that coordinate and increase family ing with MS and their loved caregivers’ access to respite services. ones. Here are just a few of the • The House of Representatives passed its many highlights of the last year: funding bill for the Department of Defense Through programs & services, we helped… for fiscal year 2013, which included $5M for • 4,519 callers navigate the challenges of life MS research. with MS, connecting them to information Fundraising successes… and valuable community resources. • 1,054 people better understand a myriad of • Walk MS raised $2.5 million, and Wells Fargo donated our largest Walk sponsorship topics from treating MS and its symptoms to ever of $55K. employment and legal issues through in-per • Bike MS Coastal Challenge and Vegas son, online and teleconference classes. Challenge crossed its $1.25 million goal. • 1,049 people with MS to find the medical care they needed, partnering with leading centers • The Dinner of Champions raised $2.1M, bringing the total Dinner fundraising under for MS care by providing case management, Tom Sherak’s 20-year tenure to $47 million! medical interpretation services, rehabilitation • The Kenrose Kitchen Table Foundation and sessions and physician consultations. the Steve and Caroline Kaufer Family posed • Over 650 people cope with the emotional a $550,000 Challenge for this year’s Golden challenges MS can bring through one-on-one Circle campaign to help us raise at least $1.1 peer support, community-based groups and million in year-end giving. professional counseling services. • 500 people with over $270,000 in direct • We had our largest foundation gift ever from the Conrad N. Hilton Foundation for financial assistance. $1.245 million to support MS research.

Research advances…

• In September, the FDA approved teriflunomide once-daily pills (Aubagio®) to treat relapsing forms of MS. This is now the 2nd oral therapy, and there are currently another half dozen potential treatments in late stage development or already before the FDA for review.

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

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Connect with us online: www.nationalmssociety.org/CAL

Like us: facebook.com/MSsoutherncal

Watch us: youtube.com/MSSoCalChapter

$1.1 Million Challenge for Golden Circle The Kenrose Kitchen Table Foundation and the Steve and Caroline Kaufer Family together have posed a $550,000 Challenge for this year’s Golden Circle campaign. If Golden Circle donors contribute a total of $550,000 by December 31, 2012, the campaign will be ensured an aggregate of at least $1,100,000! All Golden Circle gifts contributed October 1 – December 31, 2012 will count toward the $1.1 million Challenge. Your contribution will fund research and help people living with MS. Please make your gift today and help the Chapter move closer toward a world free of MS. Every donation will count, regardless of restriction or giving level. There has never been a more promising time to maximize the power of your gift.

National Multiple Sclerosis Society Southern California & Nevada Chapter 2440 S. Sepulveda Blvd., Suite 115 Los Angeles, CA 90064 1-800-344-4867 Chair: Dina Tecimer Chapter President: Susan Bradley Editor: Marni Deckter Design: Sabrina Toston © 2012 National MS Society, Southern California & Nevada Chapter; Published Quarterly—Winter 2012/2013

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

04 research

Partnering on progressive ms Treatments for relapsing-remitting multiple sclerosis have moved forward, but treatments for progressive MS have remained maddeningly elusive. A newly formed International Progressive MS Collaborative intends to find out why. A far-ranging collaboration between the National MS Societies of the U.S., Canada, Italy, the Netherlands and the United Kingdom, and the Multiple Sclerosis International Federation, its mission is to speed the development of effective therapies for progressive forms of MS. “Overcoming the challenges of progressive MS is a key objective of the Society’s Strategic Response to MS,” said Timothy Coetzee, PhD, chief research officer of the Society. “This is just one of the ways we’re collaborating worldwide to speed clinical trials in progressive MS.” The collaborative’s first step was to publish an opinion paper in Multiple Sclerosis Journal that outlined the challenges in developing therapies for progressive MS. It identified five key research priorities, as follows: 01 Experimental models of MS. Animal models that more closely reflect the symptoms and underlying tissue damage of progressive MS are urgently needed. 02 Identification and validation of targets and repurposing opportunities. Advances in MS

MS connection: winter 2012/2013

genetics and the systematic re-evaluation of drugs approved for other indications may help identify new therapeutic targets in progressive MS. 03 Proof-of-concept clinical trial strategies. Lesion activity on MRI is an accepted biomarker in clinical trials for relapsingremitting MS, but no comparable measure has been identified for progressive MS — yet. 04 Clinical outcome measures. Establishing clearer outcome measures for progressive MS will help evaluate possible therapies. 05 Symptom management therapies and rehabilitation strategies. Developing symptom management therapies and rehabilitation strategies in progressive MS may be advanced by targeted research and assessing potential treatments in rigorous, well-designed trials. The collaborative has convened five working groups to discuss these challenges and opportunities and to make research recommendations in each of the key areas. “Tackling these issues will require an integrated, multidisciplinary approach to enable effective translation of research into therapies,” wrote the authors of the paper. [To read the paper in full, go to tinyurl.com/ bdjv5ak.] The collaborative will host an international conference in 2013 to plan how to continue moving research forward. Visit www.national MSsociety.org/progressiveMS for more information on progressive MS, or sign up for MS eNEWS at www.nationalMSsociety.org/signup for the latest on the collaborative’s progress. n

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

RESTORING WHAT’S BEEN LOST

ENDING MS FOREVER

Nearly 7,000 investigators convened in Lyon, France this fall at the world’s largest meeting dedicated to MS research. Among the more than 1250 scientific presentations were the latest results from trials of emerging therapies, possible risk factors, rehabilitation, CCSVI and much more. Here are just a few highlights:

Stopping:

• Statin for secondary-progressive MS: Dr. Jeremy Chataway (University College London) presented first results from a phase II, two-year study of high-dose simvastatin (a therapy for high cholesterol) involving 140 people with secondary-progressive MS. Those who took 80mg of simvastatin, versus those who took placebo, showed nearly 40% less brain volume reduction (atrophy), and also had slower clinical progression. • BG-12: Combined results of two phase III, 2-year studies of oral BG-12, this potential therapy for relapsing-remitting MS (RRMS) provides substantial benefits, including a 49% reduction of relapses and 30–32% reduction of the risk of progression, compared to placebo. • Gender differences: The MS Base is a worldwide online registry that tracks people with MS. The international team reported, based on an evaluation of 16,633 patients in the registry, that males with RRMS begin at the same level of symptoms as females, but develop more severe disease and move more quickly to the secondary-progressive phase. In those with

Restoring Function:

• Factors in MS damage and recovery: Dr. Richard Ransohoff (Cleveland Clinic) described cells called macrophages that are key players in causing nervous system damage and clearing it up to permit tissue repair. Some are derived from cells within the brain and some enter from the bloodstream; each has different roles. This work is shedding important light on new strategies to treat MS. • “On” switch for myelin-making cells?: Society grantee Dr. Gareth John (Mt. Sinai School of Medicine) and collaborators described studies that led to the discovery of a molecular switch, called KLF6, that controls whether myelin-making cells either mature or die, suggesting it could be a potential target to promote myelin formation and repair.

Ending MS

• Lifestyle Risk/Protective Factors: Dr. L. Alfredsson (Karolinska Institute, Stockholm) and colleagues reported that being overweight before age 20 is associated with increased risk for developing MS. The investigators speculate that controlling obesity in teens may reduce the incidence of MS. This team also reported that eating fatty fish, with relatively high vitamin D content, one to seven times per week slightly lowers the risk of developing MS, especially for those who receive low sunlight exposure. Visit nationalMSsociety.org/news to learn more about these and other studies presented at the Global MS Research Meeting in October. n

06 Advocacy

Victory in Medicare Settlement By marcella durand

For years, Medicare’s so-called “Improvement Standard” denied coverage of certain treatment services to people with multiple sclerosis and other diseases. However, in October, a settlement to end the standard was reached in a nationwide lawsuit in which the National MS Society was a plaintiff. The Society joined other national organizations including the Parkinson’s Action Network, the Alzheimer’s Association, United Cerebral Palsy and Paralyzed Veterans of America in a class-action suit to challenge the Centers for Medicare and Medicaid Services (CMS) over the standard. The standard denied Medicare coverage for services such as skilled nursing facilities, home health and outpatient therapy benefits like physical or occupational therapy to Medicare beneficiaries living with MS if they did not show improvement. However, these often-expensive services can be critical to prevent decline or maximize independence. The standard actually violated Medicare’s own official regulations, which state that “the restoration potential of a patient is not the deciding factor” for coverage. The agreement

MS connection: winter 2012/2013

to end the standard will vastly benefit people with MS and their families, helping place essential services back in their reach. Once the settlement is approved by Chief Judge Christina Reiss of the U.S. District Court in Vermont, where the suit was filed, the standard’s use will effectively end. CMS will revise the Medicare Benefit Policy Manual so that coverage standards will instead be based on people’s need for skilled care, regardless whether they show improvement. In addition, CMS will conduct a nationwide educational campaign about the changes, which apply to Medicare and to private Medicare Advantage plans. For more information and to follow the settlement’s progress, visit www.MSActivist.org, or sign up for MS eNEWS at www.nationalMS society.org/signup. n Marcella Durand is the content planning and development manager for the Society.

MS Activists help make change happen.

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volunteers

to research through Golden Circle, and donates his time and expertise to assist the Chapter with financial reports, audits, investments and budgets.

Congratulations to Barry Engelman and Dr. Wendy Gilmore on their induction into the Society’s prestigious Volunteer Hall of Fame.

Wendy Gilmore, PhD has volunteered for over 15 years as a valuable research advocate, trustee, fundraiser and ambassador for the Chapter. She currently serves as Associate Professor of Neurology and Cell and Neurobiology at Keck School of Medicine at USC and Division Chief, MS Comprehensive Care Center & Research Dr. Wendy Gilmore Group. She has served on panels for the review of grant applications to the National Institutes of Health and the National MS Society. Dr. Gilmore is nationally recognized for her work on the influence of hormones and pregnancy on immune function.

hall of fame In 2002, Barry and his daughter Traci started Team Engelman for Walk MS. Barry and Traci co-captained the team, until Barry took over as sole team captain in 2008. To date, Team Engelman has raised over $458,000 through Walk MS. But the Engelmans didn’t stop there. In 2008, Traci started the Rowdy Riders team for Bike MS. Again, they recruited colleagues, clients and friends to support the team by volunteering, cycling, and/or donating. The Rowdy Riders raised over $151,000 for the 2012 Bike MS Coastal Challenge. In fact, through the Engelmans’ Walk MS and Bike MS teams, they crossed the $1 million mark in fundraising in the last decade to support the movement to end MS. In addition to being a leader in our special events, Barry is also an active trustee, major contributor

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

One of Dr. Gilmore’s most notable volunteer contributions is as one of the founding members of the California Collaborative MS Research Symposium. This innovative symposium connects MS researchers to accelerate MS research progress, and to inspire the postdoctoral students in their labs to continue in the field of MS research. Thank you, again, to Dr. Wendy Gilmore, Barry Engelman and also Traci Engelman for their significant contributions to support the MS community. n

MS connection: winter 2012/2013

Three Days, Fifty Miles, a lifetime of memories This past September, over 200 walkers united to walk 50 miles in 3 days to help create a world free of MS. This inspiring weekend brought laughter, tears, camaraderie and over $800,000 to help fund cutting-edge research, as well as programs and services for people affected by MS. We could not have asked for a better event! Thank you to our incredible top fundraisers, teams and sponsors for helping us reach our goal! Elite Feet ($10,000+) 1. Anne Allen - $41,563 2. Brian Grey - $11,025 3. Gabriella Resnick - $10,815 4. Jeanne Woodard - $10,350 Top Teams Rankings Mission Possible Award ($75,000+) Hurt SO Good!! - $83,935 Gold Award ($50,000-74,999) NorCal Street Walkers w/ Good Carma - $64,252 Thank you to our generous sponsors for helping us put more money toward our mission to create a world free of MS.

® ®

INSIDE LOOK:

Challenge Walk MS would not be a success without individuals like Diane. Diane raised $5,520 and her team, Team Diane raised a grand total of $8,050. Diane was diagnosed with MS three years ago and the Challenge Walk has been a way for her to make a difference in her battle with MS. “We had to find a way to take control back and make a difference,” Team Diane shared. “The Challenge Walk gives us a way to do both. This year’s theme, Super Heroes, was a perfect fit for us. We felt empowered to fight for life without MS.” As secondyear participants of the Challenge Walk MS, Team Diane stated that “being a part of this event feels like a family; walking, talking, laughing, crying, eating, beating feet and yes, even sweating together.” Team Diane looks forward to many more Challenge Walks together!

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walk MS

be inspired. Get connected. walk MS. MS destroys connections, interrupts the flow of information between the mind and body, and pulls peopleâ&#x20AC;&#x2122;s lives off course and away from one another. So itâ&#x20AC;&#x2122;s only fitting that our connections would be its greatest enemy. What if we could connect every person living with MS? Every person who cares about someone with MS. Every family affected by it. Everyone who has seen what this disease can do to people. What if we could come together, even one day a year, to show the power of connections? At Walk MS, our connections become more powerful than the connections MS destroys. Register today and start fundraising at WalkToEndMS.org or call 310.479.4456 to get started. The money you raise at Walk MS supports promising research to stop the disease, restore function that has been lost and to end MS forever. Your dollars also help fund programs for 19,000 people living with MS and their families in our local communities. n

04.07.13 Greater LA Pasadena Rose Bowl 04.13.13 Desert Cities Palm Desert Civic Center Park Fresno Woodward Park Long Beach Belmont Pool 04.20.13 Inland Empire Citizens Business Bank Arena Las Vegas Sunset Park San Fernando Valley Woodley Park San Luis Obispo Mission Plaza

04.27.13 Antelope Valley Lancaster Marketplace Conejo Valley Conejo Creek Park Santa Barbara Leadbetter Beach 05.04.13 Big Bear Alpine Pedal Path Reno/Sparks Idlewild Park Terrace 09.21.13 South Lake Tahoe Camp Richardson 10.26.13 Bakersfield Yokuts Park

MS connection: winter 2012/2013

dinner of champions The 38th annual Dinner of Champions on September 24th in Los Angeles was a huge success, raising $2.1 million to support MS research, programs and services. The gala event honored Jeff Robinov, President, Warner Bros. Pictures Group. Director Christopher Nolan and his wife, producer Emma Thomas, presented the award to Robinov in recognition of his and Warner Bros.â&#x20AC;&#x2122; continued support in helping the Society move closer toward a world free of MS. Melissa Sherak Glasser, who was diagnosed with MS in 1987 when she was only 15 years old, was presented with the Dorothy Corwin Spirit of Life award for educating, motivating and inspiring so many to live well and pay it forward.

In the last twenty years, under the leadership of Sherak, the Dinner of Champions has been overwhelmingly embraced by the entertainment industry and raised an extraordinary $47 million. Thank you to Tom and Madeleine Sherak and the countless companies and individual donors who have generously contributed and propelled the movement forward exponentially to end MS. n

ÂŠ Alex J. Berliner/AB Images

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

1,400 guests also enjoyed tribute films created by Mob Scene and a video update, produced by Toy Box Entertainment, on MS research progress at UCLA, USC and Cedars Sinai. Byron Allen was master of ceremonies for the 20th year and also served with Joe Roth and Tom Sherak as Dinner Chairs.

Ben Affleck & Jeff Robinov

Dan Glasser, Melissa Sherak Glasser, Maya Sherak, Gabriella Sherak

Ron Howard, Christopher Nolan & Jeff Robinov

Tom & Madeleine Sherak

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The 6th anniversary Dinner of Champions Northern Nevada, honoring community leader Perry Di Loreto, on August 29th in Reno raised over $91,000. Thanks again to host Silver Legacy Resort Casino and chairs Mike Houghton and Norm Dianda for their leadership in this eventâ&#x20AC;&#x2122;s most successful fundraiser to date.

KMPH Fox 26â&#x20AC;&#x2122;s gregarious anchor Kopi Sotiropulos was at a loss for words as he accepted the award at the inaugural Dinner of Champions Fresno on September 13th. The moving evening raised $40,000. Thank you to chairs Steve Alfieris and Elaine Sotiropulos for initiating this new event in the community.

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

Steve Alfieris, Kopi Sotiropulos, Fotini Alfieris

J. Chad Taitano II, MD & Perry Di Loreto

The KMPH Team

Jason Alexander

Congressman Henry & Janet Waxman

John Corbett

David Lander & Ron Perlman

MS connection: winter 2012/2013

GOING THE DISTANCE On October 1 & 2, nearly 1,000 cyclists rode 30 – 160 miles in the Bike MS: Coastal Challenge. The energy and enthusiasm was contagious along the scenic routes and at the Oktoberfest-themed festival at San Buenaventura Park, with many cyclists and volunteers dressed in lederhosen and Hofbrau-style decorated team tents. Together, our extraordinary teams, cyclists, volunteers and generous sponsors raised $1.07 million! Thank you especially to our Century Club, led by Terri-Rae Elmer with $63,655 and our Elite Teams, led by returning champs Rowdy Riders with $151,204! Special thanks also to Criminal Minds’ Shemar Moore and The Amazing Race’s Phil Keoghan for again increasing awareness of this year’s ride and the MS cause. This year, Keoghan rode tandem with a woman who has MS as part of the “Together in MS” inspirational campaign to demonstrate that, despite their disease, the more than 400,000 Americans living with MS can still aspire to do great things. Thanks to “Together in MS” for also hosting our Friday night pasta dinner.

Bike MS Coastal Challenge 2013 October 12 & 13 • Ventura, CA Register today! www.bikeMSsocal.org Bike MS Vegas Challenge 2013 November TBD

Thank you to our sponsors

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Then, on November 10 & 11, a smaller but mighty group of 250 cyclists faced blizzard conditions at the 27th annual Bike MS: Vegas Challenge. Wild weather couldn’t dampen their spirits; and hot chocolate, blankets and heat lamps were highlights at the festival at Cleveland Clinic Lou Ruvo Center for Brain Health. Dr. Timothy West, who has been dedicated to MS research since his own mother was diagnosed in 1992 and heads the Center’s for Brain Health MS program, rode 65 miles on a stationary spin bike at the finish festival so that he was available to answer questions about MS for participants seeking more information. “One of the most exciting things about this event is that it brings together the entire Thank you to our sponsors

MS community,” said Dr. West. As we go to print on this newsletter, our terrific fundraisers have already raised a record-breaking $190,000 for this year’s event. We truly have the BEST cyclists and volunteers – thank you again! And a very special thank you to Caesars Foundation for stepping forward as Presenting Sponsor of both the Coastal and Vegas Challenge this year.

14 Living with ms

With a little support By Veronica McTiernan

For several years after I was diagnosed with multiple sclerosis in 2004, I insisted that I did not need any assistive aids in order to continue living my life as I wanted. At first, my MS affected me minimally. I had some balance issues, and some weakness on my right side. I walked with a little hippity hop, but did not trip, was able to do stairs as long as there was a rail or a friend to lean on, and could walk a fairly good distance. These activities often wiped me out, but I could do them, and that is what I focused on. I routinely dismissed using a cane, saying I didn’t need it and was able to do just fine without it, but in reality it was pride that was playing with my head. I simply did not want others to see me using an assistive aid.

Veronica with her “garden cane.”

MS connection: winter 2012/2013

Then one day in 2006, I happened to find a cane in my closet that I had been storing for someone else. I decided to use it to walk along my uneven yard to fill the bird feeders. Then I started using it while gardening to help me get up and down and in and out of flower beds. Yes, I was self-conscious about what the neighbors would think, but I felt the freedom of using the cane immediately, and I soon started calling it my “garden cane.” However, other challenges began cropping up. While my garden cane helped, it didn’t address my fatigue when digging with a regular shovel or garden fork. I needed both hands to manage these heavy tools, which left me no arm to use to lean on anything and no strength to dig while standing. My Internet searches for “adaptive gardening” only brought up suggestions of raised flower beds. This didn’t help me with my alreadyestablished perennial beds, so I would just get discouraged and think I had to settle for a half-hearted garden full of weeds. Then one day I thought to search for “adaptive gardening TOOLS.” I learned about ergonomic tools with extensions and cuffs for attaching to one’s forearm. Now I could successfully garden with one hand while standing (and leaning on my garden cane, of course!). The hand tools also gave me the leverage I needed, and the garden seat I ordered completed the package for me. The first day I got the tools I spent two hours in my garden, and I did so much work that I got a blister on my thumb. It was a badge of accomplishment for me: my first gardening

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blister in 10 years. I was delighted that what I felt when I finished was a very satisfied tiredness, and not the dreaded MS fatigue. My new mantra? “I cane so I CAN.” Now, without embarrassment, I can whip out my collapsible cane from my bike bag after completing a ride on my bicycle if I feel the need. Or I can use a PINK cane to match my dress for my niece’s wedding. I wish I didn’t have MS, and I dream of gaining back what I have lost, but in the meantime, I will continue to use my cane, adaptive gardening tools and whatever else I find I need. Where I used to see assistive aids as pointing out my weaknesses, I am now so aware of them being just the opposite. They allow me to be who I am, and to do what satisfies my soul. What else is there in life? Veronica McTiernan works as a behavior therapist with people with developmental disabilities in Westchester County, N.Y. Besides gardening, she enjoys biking, adaptive skiing and being in the great outdoors with her friends and family. Consult a physical or occupational therapist about mobility devices that will work best for you, and how to use them safely. An OT will also be able to recommend both low- and high-tech assistive aids for various activities of daily living—call the Society at 1-800-3444867 for referrals. For more information about the range of assistive aids available, search for “assistive devices” at www.nationalMSsociety. org or browse www.abledata.com.

Foundations

benevolent backers We are grateful to the foundation and corporate supporters for a total of $67,087 in grant awards received June 1, 2012 – October 31, 2012: • $27,000 from the Friends of the National Multiple Sclerosis Society for general operating support of the Northern Nevada Regional Office • $10,000 from the John and Maria Laffin Trust for the NOW research campaign • $10,000 from the San Manuel Band of Mission Indians for the Better Living program in Riverside and San Bernardino counties • $9,987 from the Change A Life Foundation for the special needs of two individuals with MS • $5,000 from the Fertitta Foundation for the Better Living program in Las Vegas • $2,600 from the Freeman E. Fairfield Foundation for HOPE at Hillcrest/Hillcrest Care Center in Los Angeles • $2,500 from the Allergan Foundation for the Optimal Wellness programs in Santa Barbara County

16 more ways to give a meaningful holiday gift

Let this holiday season be an opportunity to share the spirit of joy and love for individuals affected by MS and their families. Tribute & Memorial gifts are an easy and thoughtful way to make a difference and show someone you care. When you make a donation to support a world free of MS, we will send a lovely, personalized card to the individual of your choice.

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

MS connection: winter 2012/2013

Leave a Legacy

The Lawry Circle is the National MS Society’s recognition program for friends who have demonstrated a deep commitment to improving the lives of those with MS by establishing a deferred gift for the Society. The Lawry Circle recognizes Society founder Sylvia Lawry and thousands of others whose hard work, individual contributions, and planned giving commitments provided assets and vital momentum that support our efforts today. By making a Lawry Circle commitment, you elevate the Society to “family.” It reinforces our sense of purpose and community, and will help sustain and inspire us until the day when the world is finally free of MS. Because all deferred gifts represent an expression of lifetime commitment to the Society, the Lawry Circle has no minimum gift level and membership is for life. Individuals automatically become members of the Lawry Circle when they designate a deferred gift to the Society, including: • Bequest intentions in a will • Charitable Gift Annuities • Naming the Society as beneficiary of a retirement account or trust • Naming the Society as beneficiary of a life insurance policy or donation of a policy For more information, please contact Diane Sant at 310.479.4456 ext. 66185.

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Connection

Programs Newly Diagnosed, Next Steps 8 Thursdays, Jan.10 – Feb. 28, 6:30 – 7:30 pm Telephone Support Group People who are living with MS share many commonalities, and support groups can be a great place to discover and explore those. However, sometimes people who are newly diagnosed feel like their concerns and interests differ somewhat from those who have been living with the disease for much longer. For individuals diagnosed in the last three years, this positively focused group allows the opportunity to share information and concerns with others who are newly diagnosed. Join Beth Maldonado, LCSW in discussions around employment, communication with others, stress, exercise, fatigue and other symptoms, alternative therapies, energy management, and much more.

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

Sign Me up!

Spaces are limited to 8 to 10 participants for each group, and registered on a first come, first serve basis. To register, please contact Mary Ann Holm, Manager of Clinical Services at 310.479.4456 or maryann.holm@nmss.org

18 free from falls Do you sometimes feel unsteady on your feet? Do you often use a wall or furniture to help you balance when you walk? Do you get nervous going down stairs? Have you tripped or had an unexpected fall? Falls are quite common among people with MS. But there is something you can do to reduce your risk and prevent unnecessary injuries that can impact your well-being. Free From Falls is an 8-week fall prevention program designed specifically for people with MS who are able to walk, but may be at risk for falling. In just 8 weeks you will: • Gain an increase awareness of what can contribute to falls • Identify strategies you can use to prevent falls in your home and in the community • Engage in and develop a fitness plan to improve balance, endurance, strength and mobility to reduce fall risk • Increase your confidence to avoid falls and to manage falls, if they do occur. In a fun, supportive group atmosphere, expert instructors in rehabilitation, health and wellness will help you develop a personal plan to maximize your safety and well-being.

MS connection: winter 2012/2013

Enrolling now for classes beginning in February! TERRIO Physical Therapy & Fitness – Aquatics Center, Bakersfield 8 Thurs., starting Jan. 24, 1:00 – 3:00 pm Contact Kim at 661.321.9512. San Joaquin Valley Rehab, Fresno 8 Wed., starting Feb. 6, 5:30 - 7:30 pm Contact Fotini at 559.439.2154. Helen Gray Education Center, Joshua Tree Intro to Free From Falls Sat., Jan. 5, 10:00 am - 2:00 pm Contact Suellen at 760.776.5740. Nevada Senior Services, Las Vegas 8 Thur., starting Feb. 21, 1:00 - 3:00 pm Contact Linda Nowell at 702.736.1478 x66701. Precision Rehabilitation, Long Beach 8 Thurs., starting Feb. 21, 1:00 – 3:00 pm Contact Tiffany at 310.479.4456 x66130. The Marilyn Hilton MS Achievement Center at UCLA, Los Angeles 8 Mon., starting Feb. 25, 10:00 am - 12:00 pm Contact Tiffany at 310.479.4456 x66130. Casa Colina Center for Rehabilitation, Pomona 8 Wed., starting Feb. 20, 11:00 am - 1:00 pm Contact Crystal at 909.949.1363. The Continuum, Reno 8 Wed., starting Feb. 20, 11:00 am - 1:00 pm Contact Linda Lott at 775.329.7180. Annenberg Center, Rancho Mirage 8 Wed., starting Feb. 6 10:00 am - 12:00 pm Contact Suellen at 760.776.5740.

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dial, listen & learn

in combination with their prescribed MS treatments. Allen Bowling, MD, PhD will discuss some of the options and lifestyle choices to consider when looking at CAM. Dr. Bowling is Medical Director of the MS Service and Director of the CAM Service at the Colorado Neurological Institute. He is also Clinical Associate Professor of Neurology at the University of Colorado.

EMOTIONAL WELLNESS Practicing Ways to Increase Our Joy Tuesday, January 8, 2:00 – 3:00 pm or Tuesday, January 22, 12:00 – 1:00 pm

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

MANAGING THE DISEASE

Complementary and Alternative Medicine and MS Thursday, February 7, 6:30 – 7:30 pm Approximately 75% of Americans with MS use one form or another of complementary and alternative Medicine (CAM), generally

Learn ways to increase and enhance our joy through the lens of the Past, Present and Future. Catherine Freemire, LCSW will share concrete strategies that help to enliven us by deepening our experiences of joyful times already lived or yet to come. Our Mindsets and How to Change Them Tuesday, February 5, 2:00 – 3:00 pm or Tuesday, February 19, 12:00 – 1:00 pm We all live and function with different mindsets. Some of these mindsets are part of our temperament at birth and some of them were learned from conditioning in our environments. Some constrict our ability to learn and others give us hope in the face of failure. Learn from life coach and psychotherapist Catherine Freemire, LCSW how to recognize the type of mindsets you unconsciously use and how to change yours if it is not working for you.

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

MEDICAL CARE

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

MS connection: winter 2012/2013

SUPPORT SERVICES

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

SUPPORT FOR FAMILY MEMBERS

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

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

self help groups

Connect Community Self-Help Groups

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

at-home Telephone Group 3rd Wednesday, 1:00 pm Toll-free dial-in number: 1-888-346-3659, entry code 2713#

Los Angeles County Antelope Valley 3rd Tuesday, 6:30 pm, Robertson Honda Call Missy 661.406.0741 Burbank 4th Wednesday, 3:00 pm Call Nan at 818.762.5432 Central LA 4th Saturday, noon, Bilbrew Library Call Alva at 323.233.5413 Downey - MS Wellness Focus Thursday, 10:00 am Rancho Los Amigos Rehabilitation Center Call Staci at 310.603.6853 or 310.918.8977 GLAMS (Gay and Lesbian Support Group) 3rd Saturday, 1:00 pm, Location varies Contact Ronni at 626.392.4321 or socalglams@cs.com

Lakewood/Long Beach 3rd Sunday, 1:00 pm, Lakewood Youth Center Contact Fran at 562.925.4405 or Franitkoff@cs.com Los Angeles 3rd Thursday, 6:00 pm, Fairfax Branch Library Call Michael at 213.804.1249 or Allison at 323.876.7606 Monrovia/Pasadena 2nd Monday, 10:00 am, First Presbyterian Church Call Aynn at 626.303.4343 North Hollywood - Drumming Group Learn a unique way to express yourself. No musical experience needed. 2nd Saturday, 3:00 pm, Remo Drum Center. Call Beth at 818.219.1715 Northridge – Spanish Speaking Group 2nd Saturday, 10:00 am, Child & Family Guidance Center. Contact Maria at 818.370.8073 or Cyt1709@aol.com Santa Clarita 2nd Thursday, 6:30 pm, Blessed Kateri Catholic Church. Call Maureen at 661.803.0315 or Eires at 661.219.5561 South Bay/Harbor City 3rd Thursday, 4:00pm, Gardena Mayme Dear Library Call Pattie at 310.769.0694 Tarzana – Let’s Play social group 1st Saturday, 12:00 pm, Tarzana Community Center. Call Linda at 818.222.7678 or letsplay425@gmail.com West Covina 2nd & 4th Wednesdays, 11:00 am, Senior Center North Building. Call Tadd at 626.962.7909 or takeena@verizon.net

22 West LA Last Monday, 6:30 pm, National MS Society Contact Nancy at 310.827.5714 or nancyrush@ca.rr.com West LA – Men’s Group 3rd Tuesday, 6:00 pm, National MS Society Call Larry at 310.926.1641

Channel Islands Arroyo Grande 2nd Tuesday, 6:00 pm, United Methodist Church Call Ellen at 805.343.6094 or ellenschodrowski@yahoo.com Lompoc 1st Saturday every other month Veterans Memorial Building Call Devin at 805.772.2046 for details Morro Bay Last Saturday, 10:30 am St. Peters by the Sea Church Call Devin at 805.772.2046. Ojai 2nd Thursday, 7:00 pm Oak View Community Center or 4th Tuesday, 12:30 pm, Eggs N Potatoes Call Donna at 805.646.3750 or Tammy at 805.648.6402 San Luis Obispo - Community Circle Fridays, 10:00 am, First Presbyterian Church Includes adaptive exercises, wellness workshops and more. Call Devin at 805.772.2046 Santa Barbara - MS Friendship Circle 3rd Wednesday, 11:30 am, National MS Society Call Francine at 805.682.8783

MS connection: winter 2012/2013

Santa Maria 3rd Saturday, 10:30 am, Café Noir Call Devin at 805.772.2046 Simi Valley 1st Monday, 10:00 am, Cornerstone Church Call Dennis at 805.584.2526 Thousand Oaks 2nd Monday, 9:30 am Goebel Senior Adult Center Call Tina at 805.581.2264 Ventura Last Friday, 11:30 am, Carrow’s. Call Vincy at 805.340.9627 or vincyntha@hotmail.com

Inland Empire/Coachella Valley Lake Arrowhead 1st Friday, 4:00 pm, Location varies Call Joyce at 909.337.7573 Ontario 1st Saturday, 10:00 am, Redeemer Lutheran Christian Church. Call Emily at 909.851.6204 or Kathy at 909.621.3519 Palm Desert 2nd Wednesday, 6:00 pm, Olive Garden Contact Suellen at 760.776.5740 Palm Desert 2nd Thursday, 12:00 pm, Olive Garden Call Richard at 760.899.4174 Rancho Cucamonga - Moms with MS 3rd Tuesday, 12:00 pm, Rancho Cucamonga Resource Center. Call AnaMaria at 909.463.0334 or Kim at 909.904.0352

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

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 am, Trinity Lutheran Church Call Denise at 909.519.4410 or Raul or Tammy at regihouse@yahoo.com Upland Last Wednesday, 10:00 am, Calvary Chapel Call Denise at 909.519.4410 Yucaipa 3rd Tuesday, 2:00 pm, Good Shepherd Church Call Clare at 909.795.5128 or Tom at 909.795.1717

Nevada Carson City 3rd Thursday, 1:00 pm and 6:00pm Carson City Senior City, Carson Room Call Norma at 775.721.6565 Las Vegas/Henderson - Oasis group 1st Saturday, 11:00 am Call Ed at 702.271.3007 or Jerry at 702.285.6479 Las Vegas - MS Lunch Club 1st Tuesday, 11:30 am, Los Prados Country Club Call Darlene at 702.240.3210 Must RSVP and purchase lunch for $10/person Mesquite 1st Thursday, 10:00 am, Virgin Valley Home Care Call Erica at 702.346.7565 Reno/Sparks ”Live Life with Passion with MS” group 4th Thursday, 5:30pm, The Continuum-Reno

2nd Thursday, 5:30pm, More To Life-Sparks Call Heidi at 775.240.1085 Truckee 2nd Thursday, 5:30 pm, Tahoe Forest Hospital Cafeteria, Call Rick at 530.550.0654

San Joaquin Valley Bakersfield 1st Thursday, 7:00 pm, HealthSouth Rehab Hospital. Robert at 661.587.1445 Bakersfield 2nd Wednesday, noon or 4th Wednesday, 9:00 am Lorene’s Coffee Shop. Call Mary at 661.368.2910, Mike at 661.340.3455 or Sarah at 661.865.6238 Bakersfield - Family Support Group 4th Saturday, 10:00 am, National MS Society Call Kim at 661.321.9512 Clovis/Fresno 3rd Saturday, 9:30 am, San Joaquin Rehab Hospital Call Yolanda at 559.908.4644 or Doris at 559.299.2072 Hanford 1st Saturday, 10:00 am, First Christian Church Call Barbara at 559.584.1903 or Debra at 559.585.8054 Tehachapi 2nd Monday, 4:00 pm Tehachapi Moose Lodge Call Linda at 661.822.7440 or tehcartune@hotmail.com Visalia 2nd Saturday, 10:00 am Kaweah Delta Rehab Call Sandra at 759.759.5867

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

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

Kern County 1800 30th Street, #105 Bakersfield, CA 93301 661.321.9512 San Joaquin Valley 7472 N. Fresno St., #210 Fresno, CA 93720 559.439.2154 NEVADA OFFICES Northern Nevada 4600 Kietzke Ln., #K-225 Reno, NV 89502 775.329.7180

Coachella Valley 73-710 Fred Waring Dr., #103 Southern Nevada 2110 East Flamingo, #214 Palm Desert, CA 92260 Las Vegas, NV 89119 760.776.5740 702.736.1478 Inland Empire 3110 E. Guasti Road, #320 Ontario, CA 91761 909.949.1363

Scholarships

MS shouldn’t stand in the way of an education. The Society’s scholarship program helps highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. Scholarship applications for 2013 awards are now being accepted through January 15, 2013. For detailed guidelines and application information, please visit www.nationalMSsociety. org/CALscholarships.