SOUTHERN CALIFORNIA & NEVADA CHAPTER
MOVING TOWARD A WORLD FREE OF MS | WINTER • 2010
BIGGER & BETTER, TOGETHERÂ The MS movement in Southern California and Nevada has come together to create a new and expanded Chapter that will better serve the nearly 19,000 people living with MS and their loved ones in our local communities. Our newly combined Southern California & Nevada Chapter will afford us opportunities to provide additional programs and services, improve efficiencies, raise more money and increase our commitment to national MS research. Together, our award-winning programs and services will support more people with MS. The Southern California Chapter has long been recognized for the delivery of effective and innovative programs. Our core programs are available everywhere throughout the Chapter. No matter where you live in Southern California or Nevada, you have access to a wide variety of programs and services, including counseling support and services, employment and insurance help, individual care management, financial and
long-term care assistance. Many of our unique programs, such as the Book Club or teleconference educational programs, are offered via telephone or email, allowing you to participate from the comfort of your own home. Headquartered in West Los Angeles, the Chapter now has 8 regional offices (Bakersfield, Fresno, Lancaster, Palm Desert Santa Barbara, and Upland, plus Las Vegas and Reno) and is comprised of 52 dedicated professional staff and numerous volunteers. Together, our special events will be bigger and better. Walk MS now has 14 scenic sites from which to choose. Whether you participate in the mountains at Big Bear or Reno, by the Beach in Santa Barbara, or Town Square in Las Vegas, you are sure to find enthusiastic crowds, terrific food and entertainment, and exciting finish festivals. CONTINUED ON PAGE 16
INSIDE THIS ISSUE
Volunteers Page 4
Research Page 7
David Osmond Page 10
Advocacy Page 18
800.344.4867 Publication of the National Multiple Sclerosis Society
Southern California & Nevada Chapter Chairman • Paul M. Mahoney, Esq.
Chapter President • Leon LeBuffe, Ph.D. Newsletter Editor • Marni Deckter Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. National MS Society medical advisors recommend that people with MS talk with their health care professional about using one of these medications and about strategies and effective treatments to manage symptoms. If you or someone you know has MS, please contact the Society today at nationalMSsociety.org or 800.344.4867 to learn about ways to help manage MS and about current research that may one day reveal a cure. The National Multiple Sclerosis Society (NMSS) does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The NMSS assumes no liability for the use of contents of any product or service mentioned. Information provided by the NMSS is based upon professional advice, published, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The NMSS recommends that all questions and information be discussed with a personal physician. We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. © 2010 NMSS Southern California Chapter Published Quarterly — Winter 2010
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Financial Assistance A Helping Hand When It’s Needed Most
We offer financial assistance through the Direct Assistance Program to individuals with MS and their families to help access needed services that are not available using other resources (private insurance, Medicare, MediCal). The program is based on financial need and offers funding for the following services: Rhoda Goetz Personal Care Fund: • Beauty/Wellness: A fund to assist individuals who are faced with financial, logistical or physical barriers to maintaining healthy personal hygiene and care. Gain access to services such as hair, skin and nail care. • In-Home Assistance Support: 8 consecutive days, 4 hours/day after a hospital stay or exacerbation. Must use licensed home care agency. • Chore Service Program: Assistance for house cleaning service. Limit: up to $300 per fiscal year. Durable Medical Equipment: Share of cost for durable medical equipment (wheelchairs, hand rails, etc.) if not covered by insurance. Limit: up to $400 per year. Sherak Emergency Fund: Funding for unexpected one-time situations (food, rent, utilities). Official documentation demonstrating proof of emergency is required with application. Limit: up to $300 per year. Physical/Occupational/Speech Therapy: In-home evaluation and five to six follow-up visits for a person who cannot leave home and whose insurance will not cover this service. Grisanti Respite Fund: Provided through a licensed home care agency for the family member who is a fulltime care partner and needs time off. Share-of-cost basis. Up to 6 days/year, up to 12 hours/day. 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 per year Checks are made out and sent directly to the vendor. For more information about any of these financial assistance programs, please call 800.344.4867 or 310.479.4456.
PRESIDENT’S MESSAGE
Dear Friends, I am thankful this Thanksgiving for the tremendous progress we have witnessed this year in the world of MS treatments and research, advocacy, and services. The following are just a few of the year’s many highlights: Research & Treatment • To start the year, the FDA approved Ampyra™ (dalfampridine, Acorda Therapeutics), for its ability to improve walking in people with any type of MS. This is the first therapy specifically approved to treat a symptom of MS, and it represents a big step forward for the many people who may benefit. • Equally exciting, if not more so, in September, the FDA approved fingolimod capsules (Gilenya,™ Novartis International AG) for reducing the frequency of clinical relapses and delaying the accumulation of disability in relapsing forms of MS, making it the first oral disease-modifying therapy for the treatment of MS. Programs & Services • We awarded scholarships to 25 college-bound students, including top scholar Arielle Dennis. Arielle’s dad passed away from cancer a few years ago and her mom lives with MS. She said her mom’s disease “sparked a wildfire in me to find answers to unsolved questions.” Arielle started at Harvard University this fall, where she will study neurosciences in the hope of finding treatments for MS and cancer. • This summer, we held The Great Escape: Weekend Getaway for Teens with MS — the only camp of its kind in the West. Camp brought together 15 teens with MS from Southern California, Colorado, Idaho, Washington and San Francisco, and provided a lasting connection and support network for the group.
• We launched our popular Optimal Living with MS program in Bakersfield and held Living Well with MS at seven locations outside of Los Angeles County. Advocacy • Thanks to the work of MS activists, the House of Representatives passed the National Neurological Diseases Surveillance System Act in September. This legislation will establish a national system to track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including MS and Parkinson’s. This system could help inform MS research in such areas as genetic and environmental risk factors. • Representative Barbara Lee (CA) introduced legislation that would establish a new grant program within the Administration on Aging which is specifically designed to support adult day programs that target people living with multiple sclerosis and similar diseases — and that accommodate the needs of a younger population. As we start our new fiscal year and join forces with the MS community in Nevada I look forward to continued progress in the year ahead. We know the combined strengths of Southern Californians and Nevadans will help move us closer toward the ultimate goal that we all share — a world free of MS. We welcome your thoughts and ideas on how to maximize our new partnership to achieve that vision. Sincerely, Leon LeBuffe
TOLL FREE NUMBER 1 800 344 4867
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VOLUNTEERS
HALL OF FAMER In November, Stephanie Fisher was inducted into the National MS Society’s prestigious Hall of Fame class of 2010. Stephanie has been an amazing partner in innovative program delivery for ten years. Since taking the role of Executive Director at The Marilyn Hilton MS Achievement Center at UCLA in 2001, Stephanie has been influential in working in tandem with Society volunteers and staff to develop a scope of programs that address the quality of life for people with MS across the continuum of the disease — from diagnosis to long-term care. These programs include: Living Well with MS This 12-week program helps those with a recent MS diagnosis to better understand MS and develop lifestyle strategies that can help diminish the effects of the disease. REACH to Achieve Recreation, Exercise, Art therapy, Cognitive stimulation, and Health education are integral components to this weekly adult day program. CogniFitness—Keeping the Mind Moving This 8-week program helps facilitate focus and concentration, improve memory, organization, problem solving and critical thinking skills.
Stephanie’s ambition to help has translated the work and the programming at the Center to make it accessible to people with MS beyond the Center’s walls and into communities across Southern California and nationwide. In addition to her remarkable leadership in the creation and delivery of these programs, Stephanie has been influential in identifying and leveraging resources that have greatly benefited the Chapter. She developed relationships with UCLA Extension to help deliver our Living Well program online, and has been exploring the possibilities for telemedicine to link those living in rural communities with MS specialty care. Stephanie is also a Walk MS fundraiser with the MS Achievers–UCLA team, stewards major donors, and chaired the strategic planning committee for programs & services. She is passionate about long-term care issues that impact those living with progressive MS. She gives voice to the MS community by being a strong advocate of long-term care, meeting with legislators and testifying for bills that address needs of those with MS who have faced the challenges of disability. In addition to her work with the Chapter, she has served on the National Adult Day Taskforce and has planned and presented at the National Adult Day Alliance Meeting.
FallProof™ Balance and Mobility Program Participants learn to maintain and improve balance, and gain skills that may help prevent the risk of falls and injury in this unique multiweek program. Stephanie helped to adapt this program, originally designed for the aging Stephanie has long been a hall-of-famer in our eyes. population, to address mobility issues presented We’re proud that she has now received national by MS. recognition for her many years of service to the MS community. While the Center at UCLA primarily serves people with MS in the Greater Los Angeles area, 4
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PROGRAMS
LIVING WELL WITH MS People live with MS, but is it possible to live well with MS? Many people do. They learn ways to address issues central to their overall well-being. “Wellness is not dependent on not having a disease— you can have a health issue and still live well. You can learn strategies to live optimally with the disease,” said Stephanie Fisher, MA, executive director of The Marilyn Hilton MS Achievement Center at UCLA. The Hilton Center recently shared its experiences as a leader in the wellness field. Here are some of what they view as core components of wellness. • Exercise. Physical activity blunts the impact of MS by improving the body’s overall condition—increasing strength, range of motion and cardiovascular health. “We know exercise is beneficial, within one’s personal limits,” said Denise Nowack, RD, executive vice president, Programs and Services, Southern California & Nevada Chapter. Working with a health care professional will help determine what and how much exercise works for you—whether it is tai chi, yoga, aquatic exercises, bicycling, or something else. • Eating well. “Good nutrition is important, as is managing weight, since extra weight adds to fatigue,” Nowack added. There are lots of resources on eating healthily (and deliciously). Visit nationalMSsociety.org and search for “nutrition” to find recipes, meal planning and information on nutrients important to people with MS. • Knowledge. A current and accurate understanding of MS, its symptoms and treatments can help people navigate medical decisions and get more from their partnerships with health-care professionals. However, there’s lots of misinformation both online and off. Call us
or visit nationalMSsociety.org to start finding up-to-date and helpful resources. • Emotional and spiritual resources. The grief and sense of loss that a diagnosis brings up are powerful factors. Paying attention to one’s inner self can help people learn “to recognize the things that drain them emotionally and how they can minimize them,” Nowack said. “People can develop practices to carry them through their lifetime.” For more information on all the aspects of living well with MS, visit nationalMSsociety.org/healthyliving or call us at 800.344.4867 for information about wellness-focused programs, classes, support groups and more for people with MS in this area.
Real Changes in 12 Weeks? Move forward after an MS diagnosis and change your health and well-being today! Living Well with MS is a class designed specifically for people diagnosed with MS within the last few years. This course is offered in a combination of online and in-person meetings. In just 12 weeks you will: • meet other individuals like you, in a positive and proactive setting of shared support • develop a comprehensive personal fi tness and nutrition plan • understand and better manage MS symptoms • develop positive emotional and spiritual health practices to use across your lifetime The winter 2011 session is enrolling NOW for 12-week classes in Bakersfield, Fresno, Lancaster, Thousand Oaks, San Bernardino and West Los Angeles. Call today! TOLL FREE NUMBER 1 800 344 4867
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Programs
ADVENTURES IN CHOLESTEROL By KATHERINE SHAW
it turns out, I can’t blame the reading glasses on my MS either. Go figure. However, in thinking through this little cholesterol adventure, I have to say that I’m pleased with the outcome. Better normal aging than the progression of disease! Katherine Shaw lives in Ohio.
Prevention Counts
I’ve always considered my cholesterol level a source of pride. At a happy 150ish for the last 25 years, I was sure that cholesterol would never be a concern. I have MS. Isn’t that enough?! So last year, I go to the doc for a check up. Blood work comes back with a cholesterol level of 210. But the doc says no big deal. Since I didn’t fast beforehand, it’s probably nothing. But I made sure to fast this year and my level was 210 again! What? I haven’t gained weight, or done anything to deserve this. I don’t get it! On a visit to my MS doc, I whip out my blood tests and ask if this ridiculous jump could be related to my MS. Both the doctor and the nurse smirk. “What?” I ask, feeling left out of the joke. “You’re younger than we are, but not by much. It’s called aging,” explained the doctor. “And no, you can’t blame it on the MS.” Since that time, I’ve become a better listener when my middle-aged friends complain about their health. They’ve become a wonderful reality check for me. As 6
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Although managing MS can feel like a fulltime job, it’s important to pay attention to general health, too. People with MS face the same risks of cancer, heart disease and stroke as everyone else. For a list of screening and vaccinations recommended for your age group, download the Preventive Care Recommendations brochure at nationalmssociety.org—or call us for a copy.
APPLY NOW FOR SCHOLARSHIPS Highly qualified high-school seniors who have been diagnosed with MS or who have a parent with MS are eligible for the National MS Society’s scholarship program. Additional criteria include financial need, academic record, participation in school or community activities, and an essay (written by the applicant) on the impact of MS on his or her life. Awards range from $1,000–$3,000 and a small number of four-year awards are offered. Applications for 2011 scholarships will be accepted (online only) between October 1, 2010, and January 14, 2011. For more info, visit nationalMSsociety.org/ scholarship or call us.
research
STUDYING ALTERNATIVE & COMPLEMENTARY THERAPIES LOW-FAT DIET
MS specialists recommend that people with MS adhere to the same low-fat, high-fiber diet that is recommended for the general population. While different diets have been proposed as a treatment for the signs and symptoms of MS, none have been proven to do so in rigorous, controlled studies. Investigators at Oregon Health & Science University are recruiting 54 people with relapsing-remitting MS for a study to determine the effectiveness of the McDougall Program — a low-fat, plant-based diet — on controlling disease activity in MS. Researchers are recruiting people with relapsingremitting MS, ages 18 through 70, who have had MS for less than 15 years. They may or may not be on disease-modifying therapies for MS, but if on, must have been treated for more than 6 months of continuous therapy. Participants should be able and willing to travel to Santa Rosa, California for the 10day training program and to Portland, Oregon for six study visits over the 12-month study period; travel costs are covered by the study. Those receiving the diet training will be expected to adhere to the diet for the one-year duration of the trial. To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please contact Erin Davis, Study Coordinator, at 503.494.3549 or daviser@ohsu.edu.
MEDITATION
Paul Grossman, PhD (University Hospital, Basel) and colleagues found that mindfulness-based meditation significantly improved health-related quality of life, depression, and fatigue in the largest study of its kind, involving 150 people with relapsing-remitting and secondary-progressive MS. This controlled study provides important evidence on the value of an alternative treatment for MS symptoms, and highlights the importance of focusing on quality of life issues to improve well-being. Propelling more research to address quality of life issues in MS is a key part of the National MS Society’s 2011-2015 Strategic Response initiatives.
EXERCISE
UCLA and Cal State Northridge (CSUN) are looking for volunteers with MS for a 6-month study to see if persons with MS can tolerate a specific exercise program and if the exercise can improve their ability to think and remember. The study involves a 20-30 minute exercise session 3 times per week for 72 sessions and 4 additional sessions for assessments. Researchers are looking for men and women 18 - 60 years old, diagnosed with definite relapsing-remitting or secondary-progressive MS, who have difficulty with thinking or memory. You must be able to walk at least 25 feet with or without an assistive device and can ride a stationary bicycle. If you are interested, please call Elise Herlihy, RN at 310.267.4077 for further information about eligibility and participation at either location.
TOLL FREE NUMBER 1 800 344 4867
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RESEARCH ADVOCACY
Why does MS research cost so much? Fifteen years ago, MS was a very different disease. Some symptoms could be treated, but there were no drugs available to treat the disease itself. That isn’t so today, thanks to MS research breakthroughs. Still, the need for better treatments remains pressing and MS Dr. Timothy research continues toward Coetzee this goal. There’s no doubt that such research comes at a cost. Bringing an MS drug from idea to reality can cost over a billion dollars. What exactly makes MS research so expensive? We asked Timothy Coetzee, PhD, president of Fast Forward, a research subsidiary of the Society established to fast-track research into MS and help bridge the gap between research findings and the companies that will manufacture and market the therapy. “You pay scientists to design and execute research plans, you pay technicians to analyze results,” Dr. Coetzee told us. This work requires highly specialized equipment in physical plants that the FDA has to approve. “You’re not doing MS research in your garage,” he pointed out. After all the lab and animal studies, many promising therapies will fail to prove out. For those that do, more time-consuming and expensive tests must be performed to ensure that a new drug is both safe and effective for people. Testing MS drugs is particularly complex, Dr. Coetzee noted. A blood pressure pill either lowers blood pressure or doesn’t. But with MS, he continued,
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“We’re trying to measure what happens to a person’s disease course, which you can usually see only over time. Changes in MS are slow and subtle. All that time adds to the cost.” The Society invests in university-based research across the world. But that research can only become reality — a medication available for physicians to prescribe — with the involvement of the private sector. “In today’s environment,” Dr. Coetzee said, “there’s no guarantee that even good discoveries will actually make a difference in people’s lives because of the expense involved in doing needed trials. Fast Forward wants to move the ball down the field a little faster. We don’t want to leave it to chance.” For example, Amplimmune, a startup pharmaceutical company in Rockville, Md., is currently testing a drug called Amplimmune-110 for MS and other autoimmune diseases, with support from Fast Forward. “We matched Amplimmune up with MS researcher Stephen D. Miller, PhD, of Northwestern University,” Dr. Coetzee said. “Dr. Miller discovered new ways the drug works that Amplimmune’s scientists weren’t aware of. We now hope clinical trials can begin within the next couple of years.”
ADVANCES IN MS CARE Now is a very exciting time in the world of MS treatments and research, with the approval of Gilenya, new oral medications nearing approval, CCSVI, and new symptom management drugs in the pipeline. Learn from leading MS experts about these advances, as well as research trends. Join us for an upcoming Advances in MS Care program in your neighborhood. These programs will be offered in January in Las Vegas, Loma Linda, Reno and Thousand Oaks, and in February in Fresno. Call 800.344.4867 for details and to register.
DONORADVOCACY SPOTLIGHT
Philanthropic Family of the Year Every year at the National Multiple Sclerosis Society’s National Conference, we honor and celebrate one family who has made a monumental difference in the lives and futures of those living with MS. This year, this high honor went to the Power family. In 1968, Dave and Julie Power found themselves sitting at their kitchen table making the decision of a lifetime. Armed with determination and the love and support of their family, Dave and Julie launched J.D. Power and Associates. From humble beginnings to worldwide recognition, J.D. Power and Associates set the gold-standard of customer satisfaction in the automotive industry. By 1981 the business was thriving, but at home, the Power family faced a new challenge. At age 43, Julie was diagnosed with MS.
J.D. “Dave” Power
Dave and Julie’s four children, Jamey, Mary, Jonathan and Susan, ranged in ages from 10 to 17 at the time of Julie’s diagnosis. Her ‘can-do, keep fighting’ attitude made a deep impact on everyone in the family. Though Julie lost her fight in 2002, she continues to inspire her family and serve as their role model. In 2005, the Power family sold their family company and created the Kenrose Kitchen Table Foundation. True to the family’s entrepreneurial spirit, the Foundation identifies and supports unconventional solutions to today’s problems and invests in innovative solutions and ways of thinking that bring breakthroughs in medical research.
Jamey Power, Susan Power Curtin, Mary Power
The Philanthropic Family of the Year award is reserved for those families who have woven the Society’s mission into their collective fabric. The Power family has demonstrated an unparalleled level of passion to help people live well with MS through their personal philanthropy and advocacy, all while raising money and awareness for multiple sclerosis. Turn to page 17 to learn more about the Power family’s involvement with this year’s Golden Circle Challenge.
(L to R) Gerry Spinazze, Susan Power Curtin, Jamey Power, Bonnie Spinazze, Dave Power, Mary Power TOLL FREE NUMBER 1 800 344 4867
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special events ADVOCACY
Championing the Fight Against MS The 36th annual Dinner of Champions on September 27th at the Hyatt Regency Century Plaza Hotel was once again a huge success, raising more than $1.8 million for MS research, programs and services. The gala event honored Adam Fogelson, Chairman, Universal Pictures in recognition of Universal’s continued support in helping us move closer toward a world free of MS. Musician David Osmond, who was diagnosed with MS four years ago, received the Dorothy Corwin Spirit of Life award for being a passionate MS ambassador, raising much-needed awareness of the disease. In 2000, David presented the first Dorothy Corwin Spirit of Life award to his father Alan Osmond who was diagnosed with MS nearly 25 years ago. Alan proudly presented the same honor to David at this year’s event. Returning for his 18th appearance as master of ceremonies, Byron Allen welcomed nearly 1,300 attendees, including special guests Annette Bening & Warren Beatty, Ian Gomez, Phil Keoghan, Joe McIntyre, Kevin Pollak, Bill Pullman, Adam Sandler, DB Sweeney and Nia Vardalos. All enjoyed a fantastic performance by singer, musician and actor Donny Osmond. During Donny’s performance, guests enjoyed a surprise duet when he called his nephew, David Osmond, to perform with him. During dinner, attendees watched a video — produced by trustee Roland Mesa and his partner Barry Samson and their team at Toy Box Entertainment — about the Society’s “Fast Forward” initiative to speed the delivery of treatments to people with MS by relieving the obstacles and reducing some of the financial threats affiliated with bringing drugs to market. Supporters of Fast Forward featured in the video include Dave Power, trustee Jamey Power, and Emily Abbott.
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We owe tremendous gratitude to our Dinner Chairs, Joe Roth, Byron Allen and trustee Tom Sherak along with their entire fundraising committee and cochairs – especially Arthur & Britta Schramm, Annis Kishner, Stacy Wilder, Roland Mesa and John Murphy for their remarkable contribution to our success. Also, we owe many thanks to our event hosts: Deluxe Entertainment Services Group, Oxymoron Entertainment, Regal Entertainment Group, Relativity Media, Toy Box Entertainment, Universal Studios, and Variety. Thank you to every one of our donors who support the Dinner of Champions and move us closer each year toward a cure. Together, we do what we cannot do alone — keep lives moving forward.
Adam & Hillary Fogelson
Alan, David & Donny Osmond
special events ADVOCACY
DB Sweeney, Bill Mechanic and Bill Pullman
Ian Gomez & Nia Vardalos
Byron Allen
Danny & Melissa Glasser, Sondra Kalish, Gabriella Sherak, Tom & Madeleine Sherak, Ginger & William Sherak, Barbra & Paul Neinstein
Annette Bening & Warren Beatty
David, Saffron & Valerie Osmond with Melissa & Danny Glasser
Leon LeBuffe and Paul Mahoney
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SPECIAL EVENTS ADVOCACY
Challenge accepted On September 24 - 26, participants walked 50 miles from Carlsbad, down the Southern California coast, to San Diego. Challenge Walk MS 2010 enjoyed another hugely successful year with 265 walkers raising nearly $1 million. We couldn’t have done it without the incredible fundraising efforts of our participants and teams. The following individuals earned the title of Elite Feet by being one of the top five fundraisers. These six individuals are responsible for raising over $106,000! 1. Kathy Stimson $25,525 2. Anne Allen $24,661 3. Bill Bisch $18,720 4. Brian Grey $16,274 5. Greg Zolotar $10,465 5. Linda Milson $10,465 Our top teams did an amazing job with fundraising too!
THANK YOU CHALLENGE WALK VOLUNTEERS! The 2010 walkers appreciated all the enthusiasm and how well they were taken care of on their long journey. Many volunteers worked all three days providing route support, medical, ice, rest stop volunteers, and cheering. Big thank you also to the Blister Busters nursing team who were at the start line, lunch stops, finish line and many long hours at the hotel all three days taking care of the medical needs of all the Challenge participants.
Challenge Walk MS would not be possible
without our sponsors. Thank you to the following companies for supporting our mission. Presenting Sponsor
From left: Kathy Stimson, Linda Milson, Bill Bisch, Brian Grey, Anne Allen & Greg Zolotar MISSION POSSIBLE TEAM Hurt SO Good! $75,119
(Robyn Bjorklund)
Gold Level Teams Team Momentum $72,133 Nor Cal Streetwalkers $69,891 Walking Wine-rs $50,420
(Chris Serocke) (Colleen Brown) (Kellie Marsh)
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Gold Sponsors Brutoco Smoke House Grills UltraStar Silver Sponsors BJ’s Flower Fields
Roberto’s EMD Serono
Coca Cola Souplantation
SPECIAL ADVOCACY EVENTS
Cycling to put MS in the past THANK YOU to all of our cyclists and volunteers who participated in the 2010 Bike MS Southern California Ride! We had an incredible weekend on October 16 & 17.
A little drizzle could not dampen our participants’ energy, enthusiasm and commitment to moving us closer toward a world free of MS. Like Amazing Race host and MS ambassador Phil Keoghan so aptly demonstrated by riding his 100-year-old, single speed bike over 135 miles during Bike MS, all of our cyclists rode with the goal of making MS “history.” Hundreds of cyclists helped to raise nearly $900,000. Many thanks to each and every cyclist, team, and volunteer who participated in making this year’s ride a success, especially our Century Club members and Elite Teams. Top Fundraisers 1. Terri-Rae Elmer 2. David Weise 3. Traci Engelman 4. David Adler 5. David Tobler 6. Gordon Froeb
$48,045 $45,884 $13,888 $11,350 $10,972 $10,501
Bike MS thank you to our sponsors
Titanium Teams ROWDY RIDERS $124,555 NOW-MS Society Cynergy Team $78,585 Platinum Teams Black Gold KFI Bike team
$60,980 $53,905
Bike MS 2011 Registration will open soon for Bike MS 2011 in Ventura, Las Vegas and Lake Tahoe. Stay tuned.
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SPECIAL EVENTS ADVOCACY
WALK MS The 2010 Walk MS Southern California season officially ended in October with our final event in Bakersfield. Walkers there shared a memorable day with a patriotic concert from Boy Scout Troop #484, Halloween costume Southern contest and more terrific entertainment. Bakersfield California participants Walk 2011raised more than $100,000 to date, bringing the grand Walk MS: Southern California 2010 total to more than $2 million, plus nearly $175,000 from Walk MS Nevada!
Ready for Walk MS 2011? Join us at one of our 14 Walk MS sites by participating, volunteering, donating and/or recruiting others. Together, we will make a huge difference. Dollars raised help generate awareness and funds to support critical MS research and provide programs and services for the more than 130,000 Southern and Central Californians and Nevadans impacted by MS.
We owe a special thanks to the tens of thousands of walkers and volunteers who joined together as a community to show their commitment and dedication to creating a world free of MS.
walkMSsocal.org
walkMSnevada.org
SUNDAY 04.03.2011
SATURDAY 04.16.2011
Fresno Woodward Park
SATURDAY 04.09.2011
Greater Los Angeles Pasadena Rose Bowl
Big Bear Alpine Pedal Path
Las Vegas Town Square
Conejo Valley Westlake Village
S.W. Riverside County Town Square Park, Murrieta
San Luis Obispo Mission Plaza
SATURDAY 10.22.2011
SATURDAY 04.30.2011
Bakersfield Yokuts Park
SATURDAY 04.09.2011 Desert Cities Palm Desert Civic Center Park Inland Empire Quakes Stadium Santa Barbara Leadbetter Beach 14 |
Antelope Valley Lancaster Marketplace
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SATURDAY 05.07.2011 South Lake Tahoe Camp Richardson SATURDAY 05.14.2011 Reno
FUNDRAISING ADVOCACY
A charitable gift annuity It’s the perfect gift: a lifetime of payments and a lasting legacy benefiting people with MS.
• Eligibility for an immediate charitable income tax deduction
A charitable gift annuity is a simple contract between you and the Society that can benefit you or a loved one that you designate, and the movement toward a world free of MS. In exchange for your irrevocable gift of cash, appreciated securities or qualified real estate, the Society agrees to pay you, or the beneficiary you choose, a fixed yearly amount at favorable rates for the rest of your life or that of your chosen beneficiary. You choose when the payments start: now or at a later date, such as during retirement years.
• Option to select an advantageous start date for the fixed lifetime payments
Benefits to you • Provides a legacy of discovery and care • Provides a lifetime of consistent payments to you, your spouse, parent, caregiver, child or other loved one
• Membership in the Lawry Circle, a group of generous donors making legacy gifts Benefits to people living with MS and the National Multiple Sclerosis Society • The Society receives the remaining balance of your gift annuity to support MS research and programs and services critical to addressing the needs of those affected by MS. To receive personalized details on how a charitable gift annuity with the Society can work for you, contact Kate McIntosh, Vice President of Development at 310.479.4456 ext. 124 or kate.mcintosh@nmss.org
FINDING PURPOSE
Join the 1946 Society today. It’s simple – all 1946 SOCIETY you have to do is make monthly gifts of $19.46 Washington Irving once said, “Great minds have or any amount ending in purposes; others have wishes.” Instead of wishing for 9.46 (e.g. $29.46, $59.46, the cure, we are all actively doing our part to make it $149.46, etc.). Plus, when a reality. Our collective purpose is to end MS. you become a member of the 1946 Society, we’ll send you a one-of-kind Society tote bag as a warm By joining the 1946 Society you can help thank you for making this important step toward a our purpose and make a difference in the MS world free of MS. Join the movement by signing up community. With your help we will be able to fund life-changing programs and services and cutting edge on the Society’s website at nationalMSsociety.org/cal1946society. Click on “Join research. Now” and complete the membership form. Or call Please, help us make this wish into a reality. Jasmine Tsai at 310.479.4456 ext. 106 to join or make a gift by phone. TOLL FREE NUMBER 1 800 344 4867
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NEWS ADVOCACY CONTINUED from front cover
With additional marketing, recruitment and outreach efforts in Nevada, Challenge Walk MS is set to grow. The Dinner of Champions will take place not only in Los Angeles this year, but also in Bakersfield, the Inland Empire and Las Vegas. And you’ll now have three Bike MS events to choose from (or do all 3!) — in Las Vegas, Reno and Ventura. Together, we can raise more funds for both programs and MS research. History has proven that enhanced program and service delivery in our growing communities has resulted in greater fundraising return and increased potential for continued development. Whether you participate in an event or prefer to make a direct gift, you can be confident that your contribution will truly benefit MS research and programs. By consolidating administrative functions and leveraging our resources, we will keep our fundraising costs to the absolute minimum. Together, our advocacy voices are stronger. The Chapter’s Government Relations Committees (GRC) advocates on local, state and federal levels for issues important to the MS community, including accessibility, access to medication, health care, insurance, housing, transportation and employment. Dedicated volunteers from each of our states represent all of our local constituencies with one loud, steady voice. Together, we will make a difference.
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JOIN THE MOVEMENT: nationalMSsociety.org
Save the Dates MS Awareness Week March 14 - 20, 2011 Walk MS April, May & October 2011 World MS Day May 25, 2011 Dinner of Champions Bakersfield, Inland Empire and Las Vegas June dates TBA Bike MS Graeagle August dates TBA Challenge Walk MS September 9 - 11, 2011 Dinner of Champions September 12, 2011 MS Golf Classic September date TBA Bike MS: Southern California October 1 & 2, 2011 Bike MS: Cox Charities Challenge Ride November dates TBA
Participate. Volunteer. Donate.
Generous Grantors The Chapter is extremely grateful to its Southern California foundation and corporate supporters for a total of $2,141,953 in grant awards received during Fiscal Year 2010. From August 1 – September 30, 2010, one grant of $4,464 was received from the Santa Barbara Foundation for computer upgrades in the Channel Islands Regional Office.
GOLDEN ADVOCACY CIRCLE
GOLDEN CIRCLE Extraordinary People with an Extraordinary Commitment to a World Free of MS In 2009, Golden Circle — the Society’s premier major gifts campaign — provided more than $1.7 million to accelerate the development of more effective MS treatments, search for the cause and cure, and expand the Chapter’s local programming for people with MS. The Kenrose Kitchen Table Foundation, the Steve and Caroline Kaufer Family and the Tuffli Family Foundation together have posed a $500,000 Challenge for this year’s Golden Circle campaign. If Golden Circle donors contribute a total of $500,000 by December 31, 2010, the campaign will be ensured an aggregate of at least $1,000,000! All Golden Circle gifts contributed between October 1 and December 31, 2010 will count toward the $1,000,000 Challenge!
Tributes & Memorials Let it snow!
Let it snow this year with the Holiday Tributes & Memorials campaign. Why send your loved ones a regular holiday card when you can also send them a wonderful cookie cutter gift set as well? The Holiday Tributes & Memorials gift set will include a special personalized holiday card, a beautiful handcrafted snowflake cookie cutter, and a delicious sugar cookie recipe card. This delightful gesture requires a minimum donation of $25 per card, which includes all shipping and handling costs. Your donation to the Tributes & Memorials campaign shows your loved ones you
Golden Circle donors lead by example, making a powerful statement that their commitment to finding a cure for MS and improving the lives of those with MS is persistent and passionate. We invite you to become a Golden Circle Member by making a financial commitment of $1,000 or more, though gifts of all sizes are welcome. Your contribution will provide valuable assistance to the 19,000 people with MS and their 114,000 family members and friends living in our Chapter area. Every donation will count, regardless of restriction or giving level. Your contribution will fund research and help people living with MS. Please make your gift today and help the Chapter move closer toward a world free of MS. Contact Elicia Lopez, Development Direct, Annual Giving, at 310.479.4456 ext. 111 if you have any questions or would like more information about Golden Circle. There has never been a more promising time to maximize the power of your gift. care and moves us closer toward a world free of MS. The Tributes & Memorials campaign is also a perfect way to tell your loved ones happy birthday, congratulations, or send get well wishes. To make a gift or learn more about the Society’s Holiday Tributes & Memorials campaign visit www.nationalMSsociety.org/calTM or contact Jasmine Tsai at 310.479.4456 ext. 106.
TOLL FREE NUMBER 1 800 344 4867
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ADVOCACY
ADVOCACY SCRAPBOOK
As we prepare for the exciting 2011 year of MS activism, now is the perfect time to reflect on our successes in MS Awareness and activism in the last year. MS Awareness Week March 8–14,2010
The Fresno County Board of Supervisors (pictured with Fotini Alfieris and Susan Mattison) presented a proclamation acknowledging MS Awareness Week.
Volunteers and staff members coordinated a Chapter wide effort to visit key legislators’ district offices (pictured above is Robin McCray from Senator Alan Lowenthal’s office and our volunteer) on Thursday, March 11th to highlight MS Awareness Week and bring attention to our state policy priority of potentially fatal cuts to In-Home Supportive Services.
Cal Neuro Alliance March 16, 2010 Program Manager Cheryl RobertoLvovsky met with Asm. Bonnie Lowenthal (left), author of our MS-CAN legislation AB 2170 addressing mid-year prescription drug changes.
The city of Bakersfield celebrated MS Awareness Week with a proclamation and kick-off event at city hall.
Senator Carol Liu sponsored SR 37, a California Senate Resolution acknowledging MS Awareness Week. Bryan Williams, field representative from Asm. Jean Fuller’s Office, Fotini Alfieris, Bakersfield Mayor Harvey Hall, Kim Kotrla, and Scott Thackrey 18 |
JOIN THE MOVEMENT: nationalMSsociety.org
ADVOCACY
Walk MS
Public Policy Conference
April & October 2010
March 1–3, 2010
Activism took center stage…yes, MS Activists do Spark Change! We signed up hundreds of MS activists at our Walk MS events and many legislators took part in our ceremonies.
Cal Neuro Alliance partner Rick Henry with Governor-elect Jerry Brown
Southern California staff and volunteers advocated for people with MS on Capitol Hill (left to right: Cheryl RobertoLvovsky, Mary Ann Braubach, Stewart Ferry, Denise Nowack, Julie Kaufer, Leon LeBuffe, seated Kim Phillips)
Chapter President Leon LeBuffe thanked Congressman Henry Waxman for his diligent fight on behalf of people living with MS.
TOLL FREE NUMBER 1 800 344 4867
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2440 S. Sepulveda Blvd., Suite 115 Los Angeles, CA 90064
Southern California Chapter 2440 S. Sepulveda Boulevard Suite 115 Los Angeles, CA 90064 310.479.4456, 800.344.4867 CALIFORNIA OFFICES Antelope & Santa Clarita Valley 1669 West Avenue J, Suite 309 Lancaster, CA 93534 661.945.9111 Channel Islands 14 West Valerio Street Santa Barbara, CA 93101 805.682.8783 San Luis Obispo 805.772.2046
Coachella Valley 73-710 Fred Waring Dr., #103 Palm Desert, CA 92260 760.776.5740 Inland Empire 869 E. Foothill Blvd., Suite I Upland, CA 91786 909.949.1363 Kern County 1800 30th Street, Suite 105 Bakersfield, CA 93301 661.321.9512 San Joaquin Valley 7472 N. Fresno St., Suite 210 Fresno, CA 93720 559.439.2154
NEVADA OFFICES Northern Nevada 4600 Kietzka Lane Suite K-225 Reno, NV 89502 775.329.7180 Southern Nevada 5463 S. Durango Drive Suite D-115 Las Vegas, NV 89113 702.736.1478