SPRING 2013
National Multiple Sclerosis Society Southern California & Nevada Chapter
Southern California & Nevada Chapter
MS Connection Newsletter every connection counts Story page 14
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living with MS
events
programs connection
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MS connection: Spring 2013
letter from the president
i am an ms activist
On March 4 - 6, I will be joining National MS Society staff and volunteers for the 2013 Public Policy Conference in Washington, DC. As MS activists, we will advocate for: • Funding for MS research, both at the National Institutes of Health (NIH) and in the Congressionally Directed Medical Research Programs (CDMRP): The CDMRP is a peer-reviewed program that funds high-risk, high-reward research, and is funded through the Department of Defense via the Defense Appropriations Act; • Funding for the Food and Drug Administration due to the tremendous impact the FDA has on the development and availability of drugs and devices for individuals living with MS and other disabilities; • Support of MS Awareness Week; and • For Congress members to join the MS Caucus which raises awareness about MS on Capitol Hill and together, seeks creative federal policy solutions to the challenges facing people living with MS and their family caregivers.
I am honored to represent our local MS communities when visiting with Congress members and Senators, including several House Appropriations committee members, and new freshmen Congress members in both California and Nevada. But you don’t need to travel to Washington, DC, Sacaramento or Carson City to take action and shape health policies to benefit people living with MS.
Make your voice heard Whether you only have a few minutes or want to make a commitment, you can be an MS activist. Sign up to receive news and updates on health policies impacting people with MS and their families and take action on legislation that matters at www.nationalmssociety.org/MSActivist. Follow us on Twitter @MSActivist and on our blog at www.MSactivist.org to stay tuned for opportunities to weigh in with your legislators. You can even use social media to become a powerful Digital Activist. Visit our site at www.nationalMSsociety.org and click Get Involved > MS Activist Toolkit > Digital Activism to learn how you can use Facebook and Twitter to educate your public officials and others about the best interests of people with MS and their families and help drive change. It really works! Members of Congress use social media to be more responsive to and have more meaningful interactions with their constituents. In fact, all 100 U.S. Senators are now tweeting, along with 90% (398 members) of the House of Representatives. n
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Connect with us online: www.nationalmssociety.org/CAL
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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 © 2013 National MS Society, Southern California & Nevada Chapter; Published Quarterly—Spring 2013
research
researchers need you! An individual’s risk of developing MS increases several-fold if a close family member has MS. Researchers from the Harvard Medical School, Brigham and Women’s Hospital, and Partners Multiple Sclerosis Center are recruiting 5,000 people, 18 – 50 years old, who have at least one first-degree relative (parent, child or sibling) with a diagnosis of MS. The goal of the study is to identify the genetic, environmental and immune factors that may increase a person’s risk of developing MS. These findings may allow for earlier intervention to slow down MS or help to develop strategies for preventing the disease. Participants can reside anywhere in the U.S. because no travel is required. For more information about this study, please contact the research coordinator Emily Owen at 617.264.5980 or bwhmsstudy@partners.org. n 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.
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MS connection: Spring 2013
research
Progress on ms therapies by Megan Weigel, CNP, ARNP-C, MSCN
In 1993, Betaseron was released to market as the first disease-modifying therapy for multiple sclerosis. With the approval of oral teriflunomide (brand name Aubagio®) by the FDA in October, 2012, we now have nine disease-modifying therapies to treat relapsing forms of MS—and more on the horizon. The MS Emerging Therapies Collaborative, which includes the Society, provides downloadable information sheets at www.ms-coalition.org/emergingtherapies to facilitate communication between doctors and people with MS about newly approved treatments. Research on potential treatments for progressive forms of MS is also underway and the International Progressive MS Collaborative, of which the Society is a member, plans to do all it can to speed the development of those treatments. Here are the therapies to keep an eye on as we move forward into 2013. BG-12 is an oral fumarate that has been used in Europe for over a decade to treat psoriasis. Although its exact mechanism of action is not known, it is thought to inhibit immune cells active in MS and may even be protective against
damage to the brain and spinal cord. Two large phase III studies (the DEFINE trial and the CONFIRM trial, respectively) found that BG-12 significantly reduced relapses and disease activity as detected by MRI. The most common side effects were flushing of the skin and gastrointestinal upset. In 2012, Biogen Idec applied to the FDA for approval of BG-12 to treat relapsing MS, and the review process is now underway, with the FDA’s decision expected within the year. Alemtuzumab, a monoclonal antibody that depletes circulating immune (T and B) cells thought to be responsible for MS attacks, would be administered by IV infusion for five days and then for three days one year later. Genzyme applied to the FDA for approval of alemtuzumab to treat relapsing MS, based on positive results from several clinical trials, including one that showed a 55% decrease in relapses compared to interferon beta 1a (Rebif ); however, the FDA asked the company to resubmit its application, so a timeline has not yet been established. While this therapy is powerful against MS, there is concern
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regarding adverse events, such as immune thrombocytopenic purpura (ITP, a bleeding disorder), and autoimmune thyroid disorders. Laquinimod is a once-daily oral immune modulator that proved in phase III studies to statistically significantly decrease relapse rates, though not as robustly as investigators had hoped. This drug is about to be tested in another phase III study in 1,800 people with relapsing-remitting MS. Daclizumab and ocrelizumab are two other monoclonal antibodies currently under study, with favorable results thus far. A highly concentrated liquid formulation of daclizumab is under study in relapsing-remitting MS. Experimental ocrelizumab, given intravenously, significantly reduced disease activity on MRI scans in a study of 218 people with relapsingremitting MS. One person died due to brain edema; however, the relation of this death to the medication is unclear. Additional research, now going on in primary-progressive MS and relapsing-remitting MS, is needed to further determine ocrelizumab’s safety and benefits. Clinical trials of treatments for progressive forms of MS are currently underway: these include natalizumab (Tysabri), fingolimod (Gilenya) and ocrelizumab.
Making choices When we consider treatment now, in particular the possibility of switching therapies, we weigh the safety and efficacy of our older, injectable disease-modifying agents against the seeming convenience and perhaps superior efficacy of
05 newer agents. The sequencing of therapies is a new consideration, as well, as the effects of medications like natalizumab and fingolimod on the immune system may be prolonged. Questions about new therapies may mean longer or more frequent appointments with neurologists to discuss their risk-benefit ratios. Additionally, people with MS may choose to see an MS specialist, or be referred to one by a general neurologist, for treatment recommendations. However, the most encouraging part, in addition to the fact that treatments for MS may be getting more effective, of course, is that the research pipeline is full. Thanks to those who are committed to research funding, science is able to continue searching for the cure, and on that search, discover medications that will keep this disease as quiet as possible. To follow progress on potential MS therapies, sign up for MS eNEWS at www.nationalMSsociety.org/signup, or visit www.nationalMSsociety.org/research. n Megan Weigel is a Doctor of Nursing Practice and MS Certified Nurse who has been caring for people with MS for 12 years.
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generous grantors We are grateful to the foundation and corporate supporters that contributed $286,300 in grant awards November 1, 2012–December 31, 2012: • $175,000 over two years from the Weingart Foundation for core-operating support in Los Angeles, San Bernardino, Riverside, Santa Barbara, and Ventura Counties. • $35,000 from the Hurlbut-Johnson Fund of the Silicon Valley Community Foundation for The Marilyn Hilton MS Achievement Center at UCLA. • $25,000 from The Wood-Claeyssens Foundation for the Better Living program in South Santa Barbara and Ventura Counties. • $14,200 from the Change A Life Foundation for Free From Falls clinics and the specific need of an individual with MS. • $14,100 from the Friends of the National Multiple Sclerosis Society for general operating support of the Northern Nevada Regional Office. • $8,000 from the John and Maria Laffin Trust for the NOW MS research campaign. • $7,500 from the Albert and Elaine Borchard Foundation, Inc. to support the Educational Scholarship Program for Youth Affected by MS.
MS connection: Spring 2013
• $4,000 from the Lockheed Martin AERO Club for the Relationships Matters program in the Inland Empire. • $2,500 from Chevron for the 2013 MS Service Day Project in Kern County. • $1,000 from the Carl E. Wynn Foundation for the Centers for Optimal Living with MS program initiative. n
What will your legacy be? To help create a better future for the MS community through a charitable bequest is the ultimate expression of confidence in the National MS Society. Because all deferred gifts represent an expression of a lifetime commitment, there are no minimum gift levels. A bequest supports the Society into the future. What you put in your will is your legacy. Just a few sentences in your will or trust are all that is needed. You can structure the bequest to leave a specific item or amount, make the gift contingent, or leave a percentage. You may restrict a bequest to research in a specific area, such as genetics or MS triggers; or it can be earmarked for services, such as emergency funds, scholarships or educational programs. You can also honor or memorialize someone special. Please let us know you have made plans for such a gift. We would love the opportunity to thank you for your generous act. For more information, please call Diane Sant at 310.479.4456 ext. 66185.
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Cream of the crop Volunteers are the lifeblood of our organization, and we are fortunate to have so many terrific volunteers donate their time, talents and expertise to support our mission. The following individuals and companies received the Chapter’s highest awards for their efforts in 2012. Carlos Healey received the 2012 Volunteer of the Year award. Carlos has been volunteering twice a week for the last year to support our Chapter’s administrative needs. He is an anchor on our Carlos Healey team of reception volunteers, answering calls and providing excellent customer service. Carlos also assisted with a high volume of data entry during our busy events. A member of The Marilyn Hilton MS Achievement Center at UCLA, Carlos and his wife Carmen also participate annually in Walk MS. We awarded our 2012 Corporate Luminary Award to Halloween Adventure. Soon after participating in our Living Well with MS program, Julie Goldman contacted our Chapter about doing an in-store fundraising campaign during Halloween season. Julie and her husband Lenny, who is President and CEO
Lenny & Julie Goldman (center) with teammates
of Halloween Adventure, educated employees about the disease, asked customers to post Jack-o-Lantern pinups in their stores with what “MS equals to them” and solicited donations. In 2011, Halloween Adventure raised $30,000 in their 16 stores. But they didn’t stop there. In 2012, Halloween Adventure also started a Walk MS team in the Conejo Valley. Family, friends and store employees attended in costume, of course, and raised an additional $15,000. This past fall, Halloween Adventure’s in-store campaign raised $34,000 to support Walk MS as a Diamond Level sponsor. This year, their team will participate at the new San Fernando Valley Walk, and their fundraising goal is $25,000. We are extremely grateful to Julie and Lenny Goldman and their team at Halloween Adventure for raising much-needed awareness about MS and funds to support the Chapter. The Sylvia Lawry Founder Award, named in memory of the Society’s founder, recognizes those who developed or implemented a new continued on page 8
08 continued from page 7 program or event. Stamoules Produce Company received this honor for forging a creative new partnership to raise MS awareness throughout North America in 2012 and funds for the cause. Stamoules donated a portion of the proceeds of Stamoules’ broccoli sales during the month of March. They also co-branded all of their broccoli boxes shipped to grocery stores with the National MS Society’s “We Joined the Movement” logo, and bundled their broccoli stems with an orange “MS –Join the Movement” rubber band. They even painted their delivery pallets orange, and added MS information in both English and Spanish to the paychecks of their more than 2000 employees during MS Awareness Week. They were so successful that they continued with their cantoloupe boxes and are back again with broccoli in 2013. Thank you to the very generous Stefanopoulos family and their team at Stamoules. n
MS connection: SPRING 2013
living with ms
is it harder to work with MS? Julie Stachowiak, PhD
Many people with MS find it difficult to continue working, even in the early years of the disease. Tasks that seemed challenging before MS can feel insurmountable afterward. The fluctuation of daily symptoms and unknown levels of future disability make mapping out a strategic career path a challenge, to say the least. We simply do not know what the future holds around our ability to perform a job. I am lucky enough to be able to work from home. I am able to work more when I feel good, less when I feel bad, and take a quick nap if needed. There are days when I can work a full day, but there are many days when I do not feel productive at all — when even looking at the computer screen feels like torture. I know that as each year has gone on, the problems that I have had in trying to work efficiently seem to get worse. However, recent research indicates that some people who are newly diagnosed or have had an episode of a clinically isolated syndrome (CIS) may already need to adjust their time at work. Researchers in the Netherlands wanted to look at how MS-related cognitive dysfunction affected work in people who are recently diagnosed with
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MS. In the Cognition and Socio-Economics (COGNISEC) study, the researchers studied 45 people who had been diagnosed with MS or had CIS within the past two years and have been on disease-modifying therapy for less than six months or not at all.
what they found: n
People with higher levels of fatigue and disability all decreased their working hours within 12 months following diagnosis.
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Lower long-term memory scores correlated with a lower number of hours and days spent working during the week.
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People who scored lower on “focused attention” and “speed of memory” were more likely to say they “wished to work less.”
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Scores on tests assessing depression (Beck Depression Inventory) did not correlate at all with quantity of working hours.
While its findings need to be replicated in larger studies, so far this research shows that cognitive dysfunction can negatively impact the capacity to work, even in the very early stages of MS.
Working a balance What does this mean? Let’s face it, even jobs that we love can lose some of their luster when we have to negotiate symptoms that add to our physical disability. While it is tempting to keep pushing ourselves to do more and overcome some of these challenges, it is important to remind ourselves that we may have very real cognitive symptoms related to our MS that are
impacting our abilities to work the same way we did in the past. On the other hand, many people with MS continue working long after their diagnosis. Disease-modifying therapies, new technologies, better symptom management, legal employment protections and community resources can help you remain in the workforce — and education and preparation can be your most powerful tools for success. n Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and www.ms.about.com.
tools to work If you’re struggling to keep up at work, but aren’t ready to throw in the towel just yet, visit www.nationalMSsociety.org/ employment or call us at 1.800.344.4867 to learn more about your options and get connected with employment resources in your area. The Job Accommodation Network at www.askjan.org also offers information on a range of subjects for working people with disabilities. Plus, join our free teleconference on Employment Myths and Reality: What’s the Reality When Working with a Disability on April 4 (see p. 19 for details).
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MS connection: Spring 2013
living with ms
msConnect
MSConnect Project, which aims to utilize ever-advancing tablet technology to transform isolation into connection for individuals like Ponolar.
Ponolar Collins was diagnosed with MS in 1990, although she began experiencing numbness and tingling in her fingers years before. She had worked as a Senior Collector at a bank until the symptoms worsened. Ponolar recalls the day when her arm went completely numb and, from that day forward, learned to adapt to the progression of this chronic, unpredictable and disabling disease.
Since the introduction of the MSConnect Project, Ponolar has learned to use an iPad to communicate with friends and family; to connect with the world by accessing current news and social networks; and to keep her mind stimulated with games and puzzles, including her favorite, Scrabble. The tablet’s usage of tapping and swiping movements is easier, for people like Ponolar with manual dexterity issues, to operate versus manipulating a standard computer keyboard or a mouse. The shorter learning curve of the tablet also makes this the device of choice, especially for those facing the cognitive challenges of attention and thought processing. n
Ponolar Collins
After living independently for years, Ponolar knew she needed a higher level of care and physical therapy. In 2009, she came to Hillcrest Care Center, a skilled nursing facility in Long Beach, CA with over 50 residents with MS. More than 18,000 people with MS reside in skilled nursing facilities across the U.S., and more than half are younger than age 65, with a substantial number in their thirties and forties. As a partner in MS care, the Chapter has worked with Hillcrest to complement the Center’s provision of skilled care for MS residents with therapeutic exercise and a range of emotional, spiritual, intellectual and recreational activities. Recently, the Chapter also launched the
HOW CAN I HELP? • Donate your gently used tablet or iPad to the National MS Society. • Purchase a tablet or iPad directly for the National MS Society. • Donate any dollar amount to be used toward the purchase of a tablet by the National MS Society. Contact Mary Ann Holm at 310.479.4456 ext. 66121 for details. Donated tablets will be distributed to people living with progressive MS in skilled nursing facilities in our local communities.
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conquer the course As a great personal challenge and achievement that any rider can experience, Bike MS is both a weekend-long and lifelong opportunity to make a difference in your own life, and in the world. Yes, it’s a physical challenge, but Bike MS is so much more. It’s a group effort that transcends personal accomplishment and makes a difference for over 19,000 individuals living with MS in our local communities. Pedal along some of the most beautiful scenery in Southern California or Southern Nevada, while you enjoy a fully-supported and fun weekend. Enjoy delicious meals and strong support, with rest stops every 15 miles, bike mechanics and SAG vehicles. A fantastic festival awaits you on Saturday afternoon at each ride with great food, music, a beer garden and massage tent. We’ll support you every mile of the way with training and fundraising tips. Register now for one of these unforgettable rides! n
Bike MS: Coastal Challenge 2013 October 12 - 13 >> Ventura, CA 30 - 160 miles >> www.bikeMSsocal.org
Bike MS: Vegas Challenge 2013 November 9 - 10 >> Las Vegas, NV 30 - 150 miles >> www.bikeMSnevada.org
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walk MS
walking wolves
Mario Stubbs, team captain of Walking Wolves, is gearing up for his second year at Walk MS: Las Vegas. The “Wolves” consist of 60 of Mario’s family members, friends and former classmates, who have provided a great support system for him. “Once they found out I had MS, they rallied around to support me. I want everybody to recognize what MS is all about and I want them to learn about it with me.”
Be Inspired. Get Connected.
Together Everyone Achieves More
Mario’s secret to recruitment is utilizing his network. Team members are constantly recruiting their friends and family to join the team and Facebook is their tool of choice to spread the word about Walk MS, invite people to join and ask for donations. “I have about 900 friends on Facebook and I tell them to sign up for my team if they’re going to participate or donate if they can’t.” Mario also finds ways to fundraise by cooking dinners for local organizations in exchange for donations and selling team t-shirts. “I can’t wait for the Walk! As a matter of fact, I was just about to post on Facebook to see who else will be walking with me this year!”
Walk MS connects people living with MS and those who care about them. It is a day when we come together to show the power of our connections. Participating in Walk MS is more fun when you are part of a team! Share the experience of connecting with friends, family, co-workers, or anyone that wants to end MS forever. Teams grow through all kinds of connections. Ask people at your gym, members of your book club, friends at your place of worship, co-workers or neighbors. Find a Walk and start fundraising today. Because the money we raise at Walk MS funds critical research to stop MS in its tracks, restore function that’s been lost and end MS forever. Donations also support programs and services, including direct financial assistance, wellness classes, counseling and support groups, and much more. n
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Register now, connect with others and start fundraising today. Visit www.WalkToEndMS.org to get started. 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
The first step
Thank you to our 2013 partners
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
Twenty-five years ago, people living with MS and those who cared about them decided to take their first steps—literally—toward joining the movement to end multiple sclerosis, walking from downtown Minneapolis to the state capitol in St. Paul in the first Walk MS event. They raised $216,000 toward research and service programs for people with MS. The idea quickly spread, with Walk MS events taking place in more cities across the nation the very next year. Today, Walk MS events raise $50 million a year, with more than 330,000 people participating nationwide.
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Challenge walk MS
MS Awareness week
A COMMUNITY OF every SPIRIT & STRENGTH connection 3 Days. 50 Miles. Carlsbad to San Diego September 27 - 29, 2013
Challenge Walk MS is the perfect way to connect with others in our community who are passionate about ending MS. It’s a personal challenge of spirit and strength that brings people together who want to make a big difference in the lives of people with MS. Challenge Walk MS will be the most rewarding journey you’ll ever make. During this all-inclusive weekend, we will walk together for three days and 50 miles along a beautiful Southern California coastline route to make a powerful statement, and to keep moving toward a cure for multiple sclerosis. Register now and start fundraising today: www.myMSchallenge.com or call 800.344.4867 Be there. Because every connection you make and every dollar you raise supports the mission to create a world free of MS. n
counts
MS Awareness Week, March 11 - 17, 2013, is a time for people affected by MS to connect with others, share knowledge and take action to increase awareness about the disease. Your voice and the connections you create will make the movement even more powerful.
get connected • Why do you connect? Starting March 7, visit MSconnection.org to share your story and read others in our 3D connections gallery. This highly interactive site will offer ways to easily raise MS awareness among your social networks. • In support of MS Awareness Week 2013, the LA Clippers have once again joined the movement to end MS. Buy your tickets today for MS Awareness Night at the Staples Center on March 13 vs. the Memphis Grizzlies or March 17 vs. the NY Knicks. Discounted tickets include
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a commemorative T-shirt and proceeds will benefit the Chapter. www.clippers.com/ msawareness • Register a team for Walk MS, Bike MS or Challenge Walk MS. Or use this week to jumpstart your fundraising efforts. • Eat broccoli! For the second year, a portion of the proceeds of Stamoules Produce Company’s broccoli sales during the month of March will support Walk MS. Stamoules is also helping to raise MS awareness throughout North America by co-branding all of their broccoli boxes shipped to grocery stores with the National MS Society’s “We Joined the Movement” logo, and bundling their broccoli stems with an orange “MS – We Joined the Movement” rubber band. • Raise MS aWEARness by wearing orange or past event T’s or jerseys throughout the week. It can be a great conversation starter. • Spread the word with digital downloads. Visit MSconnection.org to find facebook cover photos, an IM icon for instant messaging, and banners for your email signature or your website. Share the video MS Impacts Us All. • Volunteer for MS Service Day. A team of local volunteers, with the help of funding by Chevron, will lead the Chapter’s 4th annual
15 MS Service Day on Saturday, March 16 by visiting the homes of people living with MS in Kern County to complete projects indoors and outdoors. Past projects include yard work, painting, cleaning and small home repairs/modifications. If you would like to volunteer, please call 661.321.9512. • Join an MS Awareness Week event in your neighborhood. Find fun activities, educational programs and fundraisers at nationalMSsociety.org/cal, including: • Raise a glass! Join wine tasting parties at Taste of Hope in Bakersfield or Fresno or L’uva Bella Winery in Reno. • Dine out! Select Rubio’s locations will be spreading awareness by displaying Walk MS posters and hosting give-back fundraising nights in their restaurants. Or let Rubio’s help you set up a fundraiser for your own team (during MS Awareness Week or anytime during the year). Visit www.rubios.com to find your local store and learn more. Several other restaurants in our Chapter area will also host give-back nights, including O’s American Kitchen in Palm Desert and Pismo’s Coastal Grill in Fresno. • Or host your own event. Do It Yourself Fundraising is a chance for people to raise awareness and critical funds for the MS movement in new and creative ways. Visit DoItYourselfMS.org or call Debra Gruen at 310.479.4456 to get started today. n
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MS connection: SPRING 2013
Thanks to the generosity of the following donors, more than $1,470,000 was contributed to Golden Circle during the 2012 Campaign. CIrcle of distinction ($1 million+) Angel ($500,000 - $999,999) Benefactor ($250,000 - $499,999) Steve & Caroline Kaufer Family Kenrose Kitchen Table Foundation Joan & J. David Power, III
patron ($50,000 - $249,999)
The Tuffli Family Foundation
Sponsor ($10,000 - $49,999)
Anonymous (2) • Jennifer Berkley & Alan Jones, In Honor of Dr. Nancy Sicotte • John A. Duran, John Amado Duran & Austin Ryan Fuentes • Elerding Family Foundation • Flora L. Thornton Foundation • Deanne & Joel P. Fried • The Rhoda Goetz Foundation, Inc., Kevin Goetz • Shirley & Burt Harris Family Foundation • Philip Hohnstein Family Foundation • Julie Kaufer & Frank Reddick • Pamela & Stanley E. Maron • Eugenia Riordan Mulé • MS Charity Bridge Tournament • Delia & Martha Pazos • Jerome & Faith Pearlman Foundation, Faith Pearlman • Phi Alpha Kappa Sorority • Karen Ritchie • Susan & Carl Robertson • Conrad Schlum Charitable Trust, Joan & Arnold Seidel • Dina Tecimer & Masood Sohaili • Janice & Timur Tecimer • The Susanne & Gary Tobey Family Foundation • The Warren/ Soden/Hopkins Family Foundation, Anna Marie & Bob Warren • Stephen B. Yoken • Ella Zarky
Friend ($5,000 - $9,999)
Anonymous (3) • Claudia Barski & Peter Carian • Elaine & John V. Bock, Jr. • The Corgel Family • Samuel DeLuca • Dream Cruise Car Show, Teri & Lucy Beardsley • Julie & Barry Engelman • Debbie Goldman & Bob Harper • Melanie Grisanti & Gordon McLeod • Charlotte Jacobs & Dr. S. Lawrence Jacobs • Tatiana & Todd James • Jaquish & Kenninger Foundation • Marca & Al Kaufer Foundation, Marca Kaufer • Dr. Teri Lissy • Jacqueline & Paul Mahoney • Ronald L. Olson Foundation, Joan & Ronald Olson • Fern & Bob Seizer • The Skynyrd Foundation • Louise Laraway Teal Foundation • Linda & Dennis Vaughn • Anne & Larry Wayne • Gail & Chris Williamson • Barbara Wilson & John Phillips • Anne Woodyard
Leader ($2,500 - $4,999)
Anonymous (2) • Emily & K. Zachary Abbott • Joanne Beckwith • Vicki & Robert Bond • Barbara & Morton Bowman • Kappy Bristol & James D. Bristol • Pearl & Melvin Brooks • Lynn & Bradley Califf • Buchanan MS Bowl • Stacie & Philip D. D’Amour • Sandra & Bernard Fischbach • Anita De Frantz • Donna Garber • Elvie & Yale Gieszl • Sam & Rena Given Foundation, Cristine & David Card • Ann & David Gooding • Sherri & Gary Haber • Dr. Alex Krammer • Don C. & Diane S. Lake Family • Sharon & Hal Lampert • Michael J. Lichner • Cynthia & Michael Malone • Geneva McCaron • Christine & Richard Newman • Julie & James D. Power, IV • Ric Robertson • Janice & Stephen Sacks • Nancy & Mark Samuels • Irene V. Steinman • Evelyn & Jeffrey Tolin • Happy Walters • Verona E. Weeks • Diana & Chester Widom • Howard Yamada • Annette & Gil Yanuck • Whitney Young Children’s Foundation • Gary Youngberg
Member ($1,000 - $2,499)
Anonymous (5) • Jeanette & Charles Aeschbacher • Agarwal Family Foundation, Avadhesh Agarwal • Randi BurkeAguiar & James Aguiar • Fotini & Steve Alfieris • Maurice Amado Foundation • Mindy Amster Beechen • Robert Arnold • Jeff Bader • Terry Bass • Lewis Black • Nicholas Bruyer • Julia & James Burge • Debbie & James Burrows • Barbara & Dr. George M. Byrne • Eileen T. & Gary O. Caris • Sherie & Stephen Carroll • Laurel & Aaron Clark • Heather Coombs • Toni & Bruce Corwin • Colonel John S. Costello • Edward Court • Kate Crane •
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nationalmssociety.org/cal | 1-800-344-4867
Benjamin A. Dent • Janet Dirks • Shelly & Joe Drnek • Gary East • Betty Filippin • Joseph Fischer • Gloria & Stanley Fishfader • Eileen & Don Fracchia • Brian Fuis • Margaret L. Gage • Donna & James Gallagher • Frank Garritano • Margie Gladden • Cynthia Glazar & Mark Cendrowski • Judy & David Goldstein • William Hammond • Eleanor & Jack Harter • Arlene & Richard Havel • Beatrice & Michael Hencel • Jeffrey Hess • Betty Hoover • Hospice Care of California • Linda & Roger Howard • Susan M. Howard • Denise & Paul Huether • The G & E Jennings Foundation • Charlotte & Stanley Kandel • Karen & Donald Karl • K.L. Keltner • Roberta Kirkhart • Russell Knelpp • Kimberly & Michael Kotrla • Kay & John Krattli • Pauline & Samuel Li • Celia Light • Lynch Family Charitable Fund • Peter Maller • Betsy & Bob Manger • Benjamin Matthews • Amy & Michael Mayfield • Tzviah Mayman • Dr. Cynthia McGranahan & Lyle Dawn • Sue & Ed Meltzer • Irene Mendon • Kevin Michel • David Milam • Sheryl Miller & Dr. Robert Schilling • Deborah Mlynarski • Dave Mustain • Helena & Richard Neidorf • Claudette Nevins & Benjamin Pick • Barbara A. & Paul T. Norton • Oarsmen Foundation, Dee & George Schuler • Janet Offel & Michael Nebenzahl • Pam Offsay • Oremor Management & Investment Co. • Nancy & Jason Patterson • Gail & Haim Pekelis • Sean Perrin • Jeff Peterson • Kimberly Phillips & Ross Skinner • Jacqueline Piatigorsky • Joseph Pretlow • Allane & Jeffrey Quirk • Karen Randall & Henry Hines • Fred R. Salisbury • Kay & Dr. Loren Sanchez • Eduard Sarkisov • Jane & Charles Schneider • Susan Schroeder • Priscilla & Harold Schroeder • Nancy & Norman Sloan • Brian Sharp • Deborah Shaw • Judy & David Shore • Robert Siegel • Judith & Eugene Siegel • Susi Silverman • Strawn Rosenthal • Jessie Anne Tait • Theta Chi Epsilon Sorority • Theta Chi Epsilon, Lambda Chapter • Gail Thomason • Jayne & Kelly Tien • Cynthia Torres & Michael Gisser • Charlotte Turhollow • James S. Tyre • Lorna & Dr. Shelby Wagner • Waterman Family Foundation, Seymour Waterman • Terry Weeks • Melissa & Robert Weiler • Susan K. & William M. Weintraub • Andy Wexler • Joyce White • Mary & Richard Whiting • Diana & Chester Widom • Wilbur C. Grosse Trust, Maria Elena Muñoz • Susan H. & Philip T. Winik • Martha & Charles Wolf • Dr. Myles J. Zakheim
We also gratefully acknowledge all of the donors who contributed nearly $70,000 to the 2012 Golden Circle with gifts up to $999—Thank You!
Challenge accepted. Challenge met. The 2012 Golden Circle Year End Challenge was a tremendous success! We are thrilled to announce that, for the 5th year in a row, Golden Circle donors rose to the challenge posed by the Kenrose Kitchen Table Foundation and the Steve & Caroline Kaufer Family. With the generosity of hundreds of individuals, family foundation and corporations, the Golden Circle campaign met and surpassed the year end goal of $550,000, raising nearly $665,000 via gifts of stock, personal checks, credit cards and cash between 10/1/2012 and 12/31/2012. As a result, the Golden Circle campaign raised more than $1.47 million in 2012! The contributions from this year-end challenge will assist those living with multiple sclerosis and provide hope through research. The Chapter extends its deepest appreciation to the Kenrose Kitchen Table Foundation and the Steve & Caroline Kaufer Family for their continued support and leadership.
If you are interested in learning more about Golden Circle, please call Elicia Lopez at 310.479.4456 ext. 66111.
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MS connection: SPRING 2013
Connection
Programs improving access to ms care
TAKE ME OUT TO THE BALLGAME
We are conducting a brief survey of people living with MS across our Chapter about their access to MS-related health care and the doctors they see. With your help, we hope to gain a better understanding of the issues that exist in our communities and to help the MS Society provide information about services and treatment advances to health care providers there. Your responses will be kept in the strictest of confidence.
Thanks to trustee Dave Perren for once again very generously donating seats for the 2013 Dodgers season. We have one pair of tickets available for each home game. Tickets will be distributed on a first come, first served basis with a maximum of one pair of tickets per household.
Your input is essential to this process. If you have MS, please complete our Access to MS Care Survey at www.nationalMSsociety.org/CALaccess.
To request your free, accessible tickets, contact Betty Ionescu with your top six game choices and your home address at betty.ionescu@nmss.org or 310.479.4456 ext. 66123. Visit www.dodgers.com to find a complete game schedule.
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nationalmssociety.org/cal | 1-800-344-4867
dial, listen & learn
Self-Compassion Tuesday, March 19, 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. Preregistration is required for each program. Prior to the teleconference, you will receive a toll-free dial-in number.
New Year’s Resolutions Revisited Tuesday, April 2, 2:00 – 3:00 pm or Tuesday, April 16, 12:00 – 1:00 pm
Sign me up! 800.344.4867 www.nationalMSsociety.org/CALcalendar
EMPLOYMENT & MS
Employment Myths and Reality: What’s the Reality When Working with a Disability Thursday, April 4, 6:30 – 7:30 pm What happens to my employment options when my condition worsens and what will it mean to my health care benefits? Joe Entwisle, MS, CLCP, a Senior Policy Analyst for the National Consortium for Health Systems Development, will lead an informative discussion on the impact of employment on benefit systems, and the realities when it comes to working with a disability.
EMOTIONAL WELLNESS Life Coach and Psychotherapist Catherine Freemire, LCSW, leads discussions on a new topic each month.
Learn why self-compassion is a necessary tool for life in today’s world and why it is especially important for people with a chronic illness.
Did you make any resolutions in January or create new goals for 2013? Did you know that only 8% of people actually follow through with their resolutions? Learn how to create doable resolutions and how to increase the chances that you will follow through. Practicing Ways to Increase Our Joy Tuesday, May 7, 2:00 – 3:00 pm or Tuesday, May 21, 12:00 – 1:00 pm Learn ways to increase and enhance our joy through the lense of the Past, Present and Future, as well as concrete strategies that help to enliven us by deepening our experiences of joyful times already lived or yet to come. Dealing with MS Socially Tuesday, June 4, 2:00 – 3:00 pm or Tuesday, June 11, 12:00 – 1:00 pm Tired of trying to explain MS symptoms to people? Think people doubt you or blame you for the condition? Have friends become less sensitive to the MS since you were diagnosed? Do you feel embarrassed by the symptoms? Are you isolating yourself or have friends stopped calling? Get tips on how to handle these issues.
20 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: Spring 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.
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nationalmssociety.org/cal | 1-800-344-4867
self help groups
GLAMS (Gay and Lesbian Support Group) 3rd Saturday, 1:00 pm, Location varies Contact Ronni at 626.392.4321 or socalglams@cs.com
Community Self-Help Groups
Lakewood/Long Beach 3rd Sunday, 1:00 pm, Lakewood Youth Center Contact Fran at 562.925.4405 or Franitkoff@cs.com
Connect 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 Thursday, 6:30 pm, Robertson Honda Call Missy 661.406.0741 Burbank 4th Wednesday, 3:00 pm Call Nan at 818.762.5432 Central LA 4th Saturday, 12:00 pm, Bilbrew Library Call Alva at 323.233.5413 Downey - MS Wellness Focus Thursdays, 10:00 am Rancho Los Amigos Rehabilitation Center Call Staci at 310.603.6853 or 310.918.8977 Downey - Young Professionals Group for people in their 20s & 30s. Friends & family welcome. 2nd Saturday, 10:00 am Rancho Los Amigos Rehabilitation Center Contact Sarah at 562.401.7622 or Beth at ypg@nmss.org
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 Eires at 661.2297.6887 South Bay/Harbor City 3rd Thursday, 4:00pm Gardena Mayme Dear Library Call Pattie at 310.769.0694 Tarzana – Let’s Play social group 1st Saturday, 12:00 pm, Tarzana Community Center. Call Linda at 818.222.7678 or letsplay425@gmail.com
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MS connection: SPRING 2013
West Covina 2nd & 4th Wednesdays, 11:00 am, Senior Center North Building. Call Tadd at 626.962.7909
Santa Maria 3rd Saturday, 10:30 am, Café Noir Call Devin at 805.772.2046
West LA Last Monday, 6:30 pm, National MS Society Contact Nancy at 310.827.5714
Simi Valley 1st Monday, 10:00 am, Cornerstone Church Call Dennis at 805.584.2526 or Tina at 805.581.2264
West LA – Men’s Group 3rd Tuesday, 6:00 pm, National MS Society Call Larry at 310.926.1641
Channel Islands
Thousand Oaks 2nd Monday, 9:30 am, Goebel Senior Adult Center. Call Tina at 805.581.2264
Arroyo Grande 2nd Tuesday, 6:00 pm, United Methodist Church Call Ellen at 805.343.6094 or
Ventura Last Friday, 11:30 am, Carrow’s. Call Vincy at 805.340.9627 or vincyntha@hotmail.com
Lompoc 1st Saturday every other month Veteran’s Memorial Building Call Devin at 805.772.2046 for details Morro Bay Last Saturday, 10:30 am, St. Peters by the Sea Church. Call Devin at 805.772.2046. Ojai 2nd Thursday, 7:00 pm, Oak View Community Center. Call Tammy at 805.648.6402 Ojai – Lunch meeting 4th Tuesday, 12:30 pm, Eggs N Potatoes Call Donna at 805.646.3750 or Tammy at 805.648.6402 San Luis Obispo - Community Circle Fridays, 10:00 am, First Presbyterian Church Includes adaptive exercises, wellness workshops and more. Call Devin at 805.772.2046 Santa Barbara - MS Friendship Circle 3rd Wednesday, 11:30 am, National MS Society Call Francine at 805.682.8783
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 Maria at msoliz@verizon.net or Rebecca at 760.340.0651. Palm Desert 2nd Thursday, 12:00 pm, Pizza Hut Call Richard at 760.899.4174 Rancho Cucamonga - Moms with MS 3rd Tuesday, 12:00 pm, Rancho Cucamonga Resource Center. Call AnaMaria at 909.463.0334 or Kim at 909.904.0352
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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 Tammy at 909.792.6518 Upland Last Wednesday, 10:00 am, Calvary Chapel Call Denise at 909.519.4410 Yucaipa 3rd Tuesday, 2:00 pm, Good Shepherd Church Call Clare at 909.795.5128 or Tom at 909.795.1717
Nevada 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 Contact Darlene at 702.240.3210 or mslunchclub@aol.com 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 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 Coachella Valley 73-710 Fred Waring Dr., #103 Palm Desert, CA 92260 760.776.5740 Inland Empire 3110 E. Guasti Road, #320 Ontario, CA 91761 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., #K-225 Reno, NV 89502 775.329.7180
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WalktoendMs.org 1.800.344.4867
Southern Nevada 2110 East Flamingo, #214 Las Vegas, NV 89119 702.736.1478
Walking for Jillian, diagnosed in 2009