Page 1

FALL 2013

Southern California & Nevada Chapter

MS Connection Newsletter Diet and ms FAQs on diet & MS Story page 8 Eating Well, eating easy page 15

INSIDE 04 THIS ISSUE

research

07

11

14

living with MS

special events

programs connection


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MS connection: Fall 2013

letter from the president

fun-filled fall As we go to print on this issue, we’re entering a busy fall season, with inspiring events and exciting programs for people who care about multiple sclerosis.

“When I was first diagnosed I read that MS stops people from moving. I thought my life as I knew it was over, but the National MS Society showed me how to take my life back. That’s why it’s important to me to help fund research, advocate for change, and help others lead powerful lives. I believe in the work they do and want to be part of it.” ” —TONI

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

September was jam-packed with the Dinner of Champions in Fresno; Walk MS: South Lake Tahoe and The Beat MS Dance Walk the following weekend; and the 3-day, 50-mile Challenge Walk MS the very next weekend. As we head into October, we’re looking forward to Bike MS: Coastal Challenge and our final Walk MS 2013 event in Bakersfield. Then Bike MS: Vegas Challenge is right behind in November. All of these fundraising events not only raise awareness and connect people who care about someone with MS, they also fund cutting-edge research worldwide and local programs and services. While some are joining the movement by walking, dancing, cycling or volunteering this fall, many newly diagnosed will be learning strategies to diminish the effects of the disease through our Living Well with MS online course; couples will be developing a team approach at our 8 Hours to a Lifetime of Relationship Satisfaction getaway; and others are finding strategies to keep the mind moving at local CogniFitness programs. I invite you to join me at our virtual Annual Meeting on Wednesday, November 13 (details on page 14) to learn more about the Chapter’s highlights from the year, and how we are connecting and engaging people to fuel the movement. You’ll also hear from some of the brightest minds in MS research about progress in stopping disease progression, restoring function and ending MS forever. n


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money matters

Making health insurance choices Starting October 1, most people who don’t already have health insurance will have new options for coverage when the Health Insurance Marketplace — a component of the Affordable Care Act — begins enrollment for coverage to begin January 1, 2014. The Web-based Health Insurance Marketplaces, (sometimes called “exchanges”) are a new way of shopping for health insurance coverage, allowing people to compare plans, get tax credits and other cost help. The program also includes government-certified “navigators,” who are expert health insurance counselors funded by the marketplaces to provide unbiased information, education and enrollment help to consumers

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—Fall 2013

at no cost. Coverage through marketplace plans is guaranteed regardless of pre-existing conditions, such as multiple sclerosis, and covers preventive and needed care, such as doctor’s visits, hospitalizations, maternity leave, emergency room care and prescriptions. All plans that participate in the marketplace have to show costs and what is covered in simple, understandable language that allows people to make “apples to apples” comparisons between plans. Enrollment begins October 1st at www.healthcare.gov. Call the National MS Society at 1.800.344.4867 or visit www.nationalMSsociety.org/ACAkickin for more information. 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: Fall 2013

research

were significantly reduced; however, there was significant loss of brain volume the first year, which then stabilized, and one person died. Other adverse events included excessive levels of uric acid and liver enzymes, and decreased potassium levels. Participants are being followed for a total of five years, and additional research is needed to determine the risks and benefits for people with MS of this experimental procedure.

Focus on ms research

A joint meeting held earlier this year by the Consortium of Multiple Sclerosis Centers (CMSC) and the Americas Committee on Treatment and Research in Multiple Sclerosis (ACTRIMS) showcased the latest directions in MS research. STOPPING THE DISEASE

Here is a selection from more than 200 presentations on research seeking to stop MS in its tracks, restore function to those who have MS and to end the disease forever.

Stop MS Researchers at the Colorado Blood Cancer Institute in Denver reported two-year results on a study following 24 people with highly active relapsing-remitting MS who were treated with bone marrow transplantation. Both relapses and disease activity observed on MRI scans

STOPPING THE DISEASE

RESTORING WHAT’S BEEN LOST

ENDING MS FOREVER

A study at UCLA, tested whether male and female sex chromosomes influence the response of the nervous system to injury. In female mice genetically engineered to express the male (XY) or female (XX) chromosome, XY mice experienced a more severe MS-like disease. However, immune responses did not differ. If confirmed in further studies, such findings may help to explain why MS progression occurs faster in men, even though MS is more common in women.

Restore: Rehabilitation Three separate studies reported results on falling issues.

RESTORING WHAT’S BEEN LOST

ENDING MS FOREVER

• Debra Frankel, the Society’s vice president of Programs, Services and Clinical Care, reported that participants in the Society’s Free from Falls program improved in balance and walking, and that the psychological impact of falls was reduced, even six months after the program. (For more on how to participate in Free from Falls, call 1.800.344.4867, or visit www.national MSsociety.org/freefromfalls.)


HE DISEASE

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• At the University of Illinois at UrbanaChampaign, researchers found that fall risk decreased significantly and balance improved in 10 people with MS who participated in a 12-week, home-based exercise program, compared with 12 people who did not participate. The Society is funding a continuation of the study to determine how exercise can be used to prevent falls in people with MS. • Researchers at the Oregon Health and Science University in Portland found that in 53 people with MS taking a range of medications, those taking no medications had a 27% risk of falls and that the risk of a fall increased 33% with each additional medication. Larger studies are needed to confirm how medications might affect the risk of falling, so that clinicians can consider this important aspect of MS management. • A Society-funded study at the University of Illinois at Urbana-Champaign found that video-chat sessions with a behavior change coach improved results of a six-month physical activity program among participants. The results also showed reduced fatigue, depression and anxiety. STOPPING THE DISEASE

RESTORING WHAT’S BEEN LOST

Restore: Repair Investigators at Endece, LLC reported that the molecule NDC-1308 reduced cell death in the spinal cord of mice with an MS-like disease and activated genes important in the development of myelin-making cells. The company is supporting preclinical research to develop NDC-1308 as a possible future treatment for repairing damage in MS.

RESTORING WHAT’S BEEN LOST

ENDING MS FOREVER

End MS A Society-funded study at University of Miami found that 287 Hispanic/Latinos with MS were more likely to experience symptoms of motor weakness, ataxia (problems with muscle control) and bladder problems, when compared to 275 non-Hispanic whites with MS. Latinos also responded more favorably to interferon treatments. For MS resources in Spanish and information about Latinos living with MS, visit mueveteMS.org. ENDING MS FOREVER

A study at University of Utah, Salt Lake City, using a new technique called “deep sequencing,” found that the activities of genes that instruct retroviruses was significantly increased in 14 people with primary-progressive MS. Further studies in larger numbers of people to determine the significance of these findings are about to get underway with Society funding. Data collected from the Sonya Slifka Longitudinal MS Study, established by the Society in 2000 to study demographic and disease characteristics, use and cost of health services, access to care, quality of life, treatment and more, is being made available to qualified investigators for studies on the direct and indirect costs of MS. These include the financial impact of out-of-pocket costs, informal caregiving, pregnancy and mental health treatment. n Read more about the joint meeting and other research news at www.nationalMSsociety. org/research, register today for our “Exploring Every Potential Research Solution” teleconference (details page 14), and sign up at www.nationalMSsociety.org/signup to receive our monthly MS eNEWS.


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MS connection: Fall 2013

research

Pediatric MS This summer, the Society committed $2.5 million to support research by the Network of Pediatric MS Centers, including the Pediatric Multiple Sclerosis Center at Loma Linda University Children’s Hospital (LLUCH) as one of its three newly funded centers. The nine centers nationwide have begun to receive funding to provide essential infrastructure to facilitate research, including searching for the cause of MS, by studying risk factors for the disease in children close to the time of exposure. This support for data coordination can be leveraged to answer other important research questions to advance our understanding of the disease in this most vulnerable group. Gregory Aaen, MD, the director for the Pediatric MS Center, is thrilled that LLUCH was recognized. “This is a true testament to the care we provide to our MS patients,” he said. “The most common questions I get from my patients and their families are ‘why did my child get MS?’ and ‘what can we expect in the future?’ With this funding, we are hoping to be able to provide more answers. This grant will further support research projects of the Pediatric MS Center at Loma Linda University with the hope of helping children with MS live longer, fuller and very productive lives.” One LLUCH patient who is hoping for a cure one day is 16-year-old Chloe McCabe, who was diagnosed with MS three years ago. Chloe

LLUCH patient, 16-year-old Chloe McCabe visits the Pediatric MS Center at lluch for her routine checkup with Dr. Gregory Aaen admits that with the exception of occasional blurred vision or tingling in her arms and legs, she feels like any normal teenager. “Luckily with the help of Dr. Aaen I don’t really have any symptoms of MS,” she said. Chloe and her mom Cynthia commute from San Jacinto every three months for checkups with Dr. Aaen. Dr. Aaen is thankful for the National MS Society for putting LLUCH on the map as a nationally recognized center. “When a child is suspected to have MS we want the public to think of Loma Linda University Children’s Hospital as a vital local resource.” The Society’s chief research officer Dr. Timothy Coetzee said, “Driving research to improve the care of children affected by MS and determining what triggers this disease is part of our commitment to all people living with MS.” n


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living with MS

college dreams Since 2003, the Society’s scholarship program has helped highly qualified students diagnosed with MS or who have a parent with MS reach their goal of going to college. In 2013, more than $1 million in scholarships was awarded to 678 scholars. 2013 scholarship recipient, Kasie Jones said,

“Being an only child with a dad with MS, I have found my strengths, my weaknesses, and what is really valuable in my life.” She plans to pursue a career in physiology or elementary education.

Kasie jones

2014 scholarship applications are now available, with a deadline of mid-January. For information, call 1.800.344.4867 or visit www.nationalMSsociety.org/scholarships. n

giving

generous grantors We are grateful to the foundation and corporate supporters that contributed $1,380,820 in grant awards between May 1 – August 31, 2013: • $1,350,000 from the Conrad N. Hilton Foundation for The Marilyn Hilton MS Achievement Center at UCLA • $20,000 from the Friends of NMSS for general operating support of the Northern Nevada Regional Office • $5,820 from the Change A Life Foundation for specific needs of two individuals with MS • $4,000 from the Bloomingdale’s Fund to provide scholarship underwriting for one member participant at The Marilyn Hilton MS Achievement Center at UCLA • $3,000

from

the

Freeman

Fairfield

Foundation for the HOPE at Hillcrest project at Hillcrest Care Center in Long Beach • $1,000 from the Ontario Community Foundation for MS-specific programs and services at Casa Colina Centers for Rehabilitation in Pomona n In addition to the Bloomingdale’s Fund grant, in August, Bloomingdale’s in Sherman Oaks hosted a DKNY Fashion Show, raising an additional $8,275 for our Chapter. Thanks to trustee Sheri Safan for helping to make this event a great success.

Caroline Nemeth, Alisa Chevalier and Julie Goldman, who live with MS, modeled dkny at bloomingdale’s


08 living with MS

FAQs on Diet & ms Dr. Allen C. Bowling is the medical director of the Multiple Sclerosis Service and director of the Complementary and Alternative Medicine Service at the Colorado Neurological Institute. He is also clinical professor of Neurology at the University of Colorado. After the webcast, Living Well with MS: Lifestyle, Diet and Complementary Therapies (watch it at www.nationalMSsociety. org/webcasts), the Society sat down with Dr. Bowling to get answers to your questions about diet and MS.

I hear about all these different diets for people with MS. How do I know which one I should follow? There’s a quotation that I love by nutrition writer Michael Pollan – I think about it every day and share it with my patients as well: Eat food. Not too much. Mostly plants. Diets that promote cutting back on saturated fat and enhancing polyunsaturated fat, especially omega-3 fatty acids, have undergone extensive study, with mixed results. Results of

MS connection: Fall FALL 2013

the most recent study were pretty negative, but there have been past studies with positive results. There’s some scientific rationale to support these diets’ anti-inflammatory effects, which is what we want with MS. Vegetarian and vegan diets fit quite well with a low saturated-fat diet, but it can be challenging to get omega-3 fatty acids. So, you may want to consider fish oil or other omega-3 supplements if you follow a vegetarian diet. Even if a person doesn’t have celiac disease, there is a possibility that he or she can still have sensitivity to gluten. Known as “non-celiac gluten sensitivity,” this condition is talked about a lot, but has not been extensively studied in MS. In non-celiac gluten sensitivity, when people ingest gluten, they can have abdominal symptoms, bloating and discomfort or other symptoms anywhere in the body. Some of my patients with MS have reported feeling better with a gluten-free diet. It used to be a very expensive and laborious diet, but now there are many more options, making it a lot easier to do. If you find that you feel better with a gluten-free diet, you’ll want to make sure you don’t have celiac disease – as that’s a condition that will need to be evaluated and treated by a physician. Other potentially serious conditions can go along with celiac disease, such as iron deficiency, vitamin D deficiency and osteoporosis.


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

Can you talk about diet and fatigue? There isn’t a lot of scientific information about diet and fatigue. However, there’s anecdotal information that people with MS have less fatigue if they eat smaller meals more frequently. Every time we eat a meal, our blood sugar levels go up, and then start to drop – often to below baseline levels. That can be fatiguing for anyone, and for people with MS who are already prone to fatigue, that dip in blood sugar can be even worse. If you have smaller meals more frequently, the elevation of blood sugar is less severe and the bottoming out can be less severe as well.

How does salt consumption affect MS? Recent studies indicate that high intake of salt may activate very specific components of the immune system in a way that could activate the disease process. These early animal studies will likely lead to studies in people with MS. In the meantime, the American diet is generally excessively high in salt, which may have various adverse health effects. It certainly wouldn’t be a bad idea for everyone to cut back on salt. This new area of research highlights how, with MS and other disease processes, we can get so focused on medications a person is taking and how they impact MRIs and blood tests that we sometimes forget to think about how someone is living their life and what impact lifestyle decisions may have on their MS.

09 How can I distinguish between fact and opinion when it comes to diet and nutrition? Get a read on the people who are providing the information to you. Do they have facts to back up the claims that they’re making? Have there been studies on the diet or supplement specific to people with MS? I would be cautious if any of the following are true: • the person promoting a particular diet seems to have a strong rebellion against science or conventional medicine; • there’s a strong dependence on testimonials or anecdotes; • the ingredients of a particular supplement or remedy are secret; • one diet claims to help a hundred different diseases. I also wouldn’t recommend using diet to the exclusion of definitively effective medications. To learn more about nutrition and MS, visit www.nationalmssociety.org/diet. Register today for our “Eating Well, Eating Easy” teleconference on December 5 (details page 15). Discuss your own experiences with others living with MS at www.MSconnection.org. n Originally published at www.MSconnection. org/blog.


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MS connection: Fall 2013

giving

Plan Today For Year-End Giving! You can take advantage of tax-saving strategies as you begin to think about your year-end charitable priorities. Donations can reduce your taxable income and lower your tax bill. Cash, real estate, personal property and stocks are among the most popular types of charitable gifts. All donations must be completed by December 31 to qualify for a 2013 income tax deduction. The day you transfer control of an asset is considered the gift date for tax purposes, however this date is determined differently depending on the type of asset and method of donation. • Checks — The mailing date is the date of the gift. • Credit Cards — The date the charge is authorized is considered the gift date for most credit card transactions. However, credit card donations sent by mail can use the mailing date. • Pledges — Pledges are deductible in the years they are fulfilled, not the year the pledge is made. • Securities — For securities transferred electronically, the gift date is typically the day the securities enter the recipient’s account. However, if securities are mailed, the mailing date is considered the gift date. Call for the Chapter for instructions on how to wire or transfer stock. Please consider making a special year-end gift

to the National MS Society this year. Your contribution will help meet the important needs of community members with MS and their families, while funding important scientific leads in discovering the cause, advancing therapies, and finding a cure for multiple sclerosis. If you have any questions about planning your charitable gift, please contact Kate McIntosh at 310.479.4456 x66124. n

Golden Circle $1.1 Million Year End Challenge The Kenrose Kitchen Table Foundation and the Steve and Caroline Kaufer Family together have posed a $550,000 Challenge for this year’s Golden Circle campaign. If Golden Circle donors contribute a total of $550,000 by December 31, 2013, the campaign will be ensured an aggregate of at least $1,100,000! All Golden Circle gifts contributed October 1 – December 31, 2013 will count toward the $1.1 Million Challenge regardless of restriction or giving level. Your contribution will fund research and help people living with MS. Please make your gift today and help the Chapter move closer toward a world free of MS.


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Bike ms

FRiendly competition Bike MS is a ride, not a race; but that doesn’t mean that the fundraising can’t be a little competitive. Brian Boehme created team “Depreciating Assets” for Bike MS: Vegas Challenge last year. He said, “As a team, we participate in Bike MS because we all have friends and family that are affected by the disease, and we all share a common Brian Boehme hobby, cycling. We decided to start the team because we felt that we would be more effective in raising donations as a team than as individuals; simply put, having the team support encourages others to donate a little bit more.” In 2012, a dozen team members raised $12,600. Brian continued, “Our ability to raise the large amount of donations was in part because we asked everyone we know, and also because of some friendly competition with Team Juicebar, we had the drive to raise more.” Depreciating Assets is setting the bar higher in 2013 with the goal of recruiting a larger team to raise $15,000.

Team Juicebar isn’t planning to give up that #1 team fundraising award any time soon. Captain Marty Brees explained, “This will be my 16th year of participating as a team captain for Bike MS. I will always participate with passion and dedication marty brees for a cause that needs to be addressed. One of the main reasons I ride is because I can.” Whatever your motivation is, Bike MS is a group effort that transcends personal accomplishment and touches the lives of over 19,000 individuals living with MS in our local communities. Ride. Volunteer. Donate. Fundraise.

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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MS connection: Fall 2013

dinner of champions

RENO record-breaker The 7th annual Dinner of Champions Northern Nevada, honoring the Rose and Glenn Families, was a huge success, raising a record-breaking $113,000 for the Chapter. Attendees enjoyed a wonderful dinner program, during which longtime donor Scott Canepa shared his story about his mom who lived bravely with MS until her passing in February — this mid-dinner ask raised $16,000. The lively auction included an autographed jersey from UNR alum and 49ers quarterback Colin Kaepernick, which sold for $10,000. Chapter President Susan Bradley also presented the Norman Cohn Hope Award to Mary Griewe. Mary has been with “Friends of MS” (FOMS) for 24 years, and is the nonprofit’s Executive

YOU DON’T HAVE TO BE A RUNNER TO BE A ROCKSTAR.

LEARN MORE OR REGISTER TODAY AT MSROCKSTARS.COM

honorees the Rose and glenn families Director. Under Mary’s leadership, FOMS has built their core thrift store pickup and donation business to raise $60,000 –$300,000 annually for the Society. Mary Susan Bradley & Mary Griewe employees six telephone operators, all of whom have MS or another disability. She has loaned FOMS trucks and paid her drivers to support Walk MS and Bike MS. You’ll find Mary at each and every Chapter-sponsored event; she’ll volunteer to take care of everything and anything needed. Congratulations again to the Rose & Glenn Families and to Mary. Thank you to Dinner Chairs Mike Houghton and Norm Dianda, and all who contributed to this terrific event.


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walk MS

step by step We still have one Walk MS event left this year, and it’s not too late to register to participate or volunteer in Bakersfield on October 26, 2013. It’s a spooktacular way to celebrate Halloween with family and friends! And, it’s never too early to get started with Walk MS! It is an experience unlike any other — a day to come together, to celebrate the progress we’ve made and to show the power of our connections. Don’t miss it. Mark your calendars now. Registration will open this month at www.WalkToEndMS.org. n

ready for 2014? 04.06.14 Greater LA Pasadena Rose Bowl 04.12.14 Conejo Valley Conejo Creek Park Desert Cities Palm Desert Civic Center Park

05.03.14 Antelope Valley Lancaster Marketplace Big Bear North Shore Elementary School Reno/Sparks Idlewild Park Terrace

Fresno Fig Garden Village

Santa Barbara Leadbetter Beach

San Luis Obispo Sinsheimer Park

09.20.14 South Lake Tahoe Camp Richardson

04.26.14 Inland Empire Citizens Business Bank Arena Las Vegas Sunset Park Long Beach Shoreline Village

proudly supports walk mS! Visit our sponsor Halloween Adventure Superstores this fall for the best costume, accessory and decoration selection. Last year, Halloween Adventure raised $35,000 for MS through their in-store fundraising. This season, they’re upping the goal to $40,000. Visit www.shophalloweenadventure.com to find coupons and locate one of their 13 Southern California stores. Happy Halloween!

Bakersfield fall 2014 date coming soon!


MS connection: Fall 2013

Programs

Connection

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EXPLORING EVERY POTENTIAL RESEARCH Solution sOUTHERN CALIFORNIA & nEVADA CHAPTER ANNUAL MEETING When it comes to a world free of MS, enough is not enough. The National MS Society is leaving no opportunity wasted in accelerating research projects to STOP MS in its tracks, RESTORE function that’s been lost, and END this unpredictable disease forever. Learn from leading MS researchers and clinicians in California about progress being made in each of these targeted areas. STOP: Dr. Lilyana Amezcua from USC is defining genetic and ethnic contributions in MS, with an emphasis on differences in disease expression and progression in individuals of Hispanic descent.

You’ll also hear an update on the Chapter with 2013 highlights from President Susan Bradley.

RESTORE: Dr. Nancy Sicotte from CedarsSinai is examining MRI images to search for the underlying cause of MS-related depression.

At-home toll-free teleconference + optional webinar Wednesday, November 13, 5:00 - 6:30 pm

END: Dr. Emanuelle Waubant from UCSF is focused on understanding the association bacteria in the digestive tract and the risk of developing MS in childhood and disease course.

SIGN ME UP! Call 800.344.4867 or visit www.nationalMSsociety.org/CALcalendar. Prior to the teleconference, you will receive a the toll-free dial-in number and optional URL to view the slide presentation.

Don’t miss this terrific opportunity to hear how MS experts are pursuing these promising paths.


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dial, listen & learn 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 tollfree dial-in number. Sign me up! 800.344.4867 www.nationalMSsociety.org/CALcalendar

WELLNESS Eating Well, Eating Easy

Thursday, December 5, 6:30 – 7:30 pm Can your diet and what you eat actually affect the course of multiple sclerosis? Learn from registered dietitian Denise Nowack, RD about the important role good nutrition can play. She will discuss the importance of proper nutrition in MS from diagnosis throughout life with the disease.

between aspects of your diet that could positively impact overall health, MS and manage symptoms.

EMOTIONAL WELLNESS Managing the “Roller-Coaster” of Emotions in Chronic Illness

Tuesday, November 12, 12:00 – 1:00 pm Living with a chronic illness can sometimes make life feel unpredictable, which can be difficult to cope with. Like a roller-coaster ride, with ups and downs, twists and turns, the experiences of living with a chronic illness can take a toll on one’s emotional well-being. Lisa Geren, MSW will provide participants with tools to help manage the uncertainties and emotions that can arise, as well as tips to recognize the silver-linings.

Depression and MS: Why it occurs and what you can do about it

You will learn to:

Tuesday, December 10, 12:00 – 1:00 pm

• Determine what gets in the way of eating well • Identify strategies to easily integrate healthful eating into your lifestyle • Recognize the interrelationship

Licensed psychologist Dr. Steven Gemignani will describe the signs and symptoms of depression as well as the incidence rate of depression for people with MS. We will also review the specific factors that may cause depression for those with MS and the various options available to reduce depressive symptoms.


16 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: Fall 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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self help groups

Connect Community Self-Help Groups

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

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

Los Angeles County Antelope Valley 3rd Thursday, 6:30 pm, Robertson Honda Call Missy 661.406.0741 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 20s - 40s. 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 GLAMS (Gay and Lesbian Support Group) 3rd Saturday, 1:00 pm, Location varies. Contact Ronni at 626.392.4321 or socalglams@cs.com

Lakewood/Long Beach 3rd Sunday, 1:00 pm, May Boyer Park Contact Fran at 562.925.4405 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, 12:00 pm, Remo Drum Center. Call Beth at 818.219.1715 Santa Clarita  2nd Thursday, 6:30 pm, Saint Kateri Catholic Church. Call Eire at 661.297.6887 South Bay/Harbor City 3rd Thursday, 4:00 pm, Gardena Mayme Dear Library. Call Pattie at 310.769.0694  Tarzana/Northridge – Spanish Speaking Group 2nd Saturday, 10:00 am, Tarzana Community & Cultural Center. Contact Maria at 818.370.8073 Tarzana – Let’s Play social group 1st Saturday, 12:00 pm, Tarzana Community Center. Call Linda at 818.222.7678  West Covina  2nd & 4th Wednesdays, 11:00 am, Senior Center North Building. Call Tadd at 626.962.7909 West LA  Last Monday, 6:30 pm, National MS Society Contact Mary Ann at 310.479.4456 ext. 66121 West LA – Men’s Group  3rd Tuesday, 6:00 pm, National MS Society Call Larry at 310.926.1641


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MS connection: Fall 2013

Channel Islands

Inland Empire/Coachella Valley

Arroyo Grande 2nd Tuesday, 6:00 pm, United Methodist Church Call Ellen at 805.343.6094

Hemet 1st Friday, 10:00 am, Hemet Public Library Call William & Mary at 951.809.3651

Lompoc 1st Saturday every other month, Veteran’s Memorial Building. Call Devin at 805.772.2046

Lake Arrowhead 1st Friday, 4:00 pm, Location varies Call Joyce at 909.337.7573

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

Ontario 1st Saturday, 10:00 am Redeemer Lutheran Christian Church. Call Emily at 909.851.6204 or Kathy at 909.621.3519

Ojai Valley – Wallwalkers 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 Santa Maria 3rd Saturday, 10:30 am, Café Noir Call Devin at 805.772.2046 Simi Valley 1st Monday, 10:00 am, Cornerstone Church. Call Dennis at 805.584.2526 or Tina at 805.581.2264 Thousand Oaks 2nd Monday, 9:30 am, Goebel Senior Adult Ctr. Call Tina at 805.581.2264 or Ken at 818.518.4226 Ventura Last Friday, 11:30 am, Carrow’s. Call Vincy at 805.340.9627 or vincyntha@hotmail.com

Palm Desert 2nd Wednesday, 6:00 pm, Olive Garden Contact Maria at 760.238.8200 or Rebecca at 760.340.0651. Rancho Cucamonga - Moms with MS 2nd Tuesday, 12:00 pm, Rancho Cucamonga Resource Center. Call AnaMaria at 909.463.0334 or Kim at 909.904.0352 Rancho Mirage 2nd Thursday, 11:00 am, Mimi’s Cafe Call Richard at 760.899.4174 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, Tammy at 909.792.6518, or Jacqueline (Spanish-speaking) at 951.302.3529 Upland Last Wednesday, 10:00 am, Calvary Chapel Call Tammy at 909.792.6518 or Denise at 909.519.4410 or dennydiego5@verizon.net


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

Yucaipa 3rd Tuesday, 2:00 pm, Good Shepherd Church Call Clare at 909.795.5128 or Tom at 909.795.1717

Nevada Las Vegas 3rd Wednesday, 7:00 pm, Nellis Housing Office Call Paula at 702.518.4806

San Joaquin Valley Bakersfield 1st Thursday, 7:00 pm, HealthSouth Rehab Hospital. Call Christine at 661.321.9512 Bakersfield - Breakfast & Lunch Groups 2nd Wednesday, noon or 4th Wednesday, 9:30 am Lorene’s Coffee Shop. Call Ron at 661.833.0388 or Sarah at 661.865.6238

Las Vegas/Henderson - Oasis group 1st Saturday, 11:00 am. Call Ed at 702.271.3007 or Jerry at 702.285.6479

Bishop 3rd Saturday, 10:00 am, Calvary Baptist Church Call Danice at 360.690.6012 or Brad at 360.690.5712

Las Vegas - MS Lunch Club 1st Tuesday, 11:30 am, Los Prados Country Club Call Darlene at 702.240.3210. Must RSVP and purchase lunch for $10/person

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

Las Vegas- Westside Stories 3rd Wednesday, 6:00 pm, HealthSouth Call Darlene at 702.240.3210

Fresno – Spanish Speaking Group Call Sharon at 559.579.4096 for details.

Mesquite 1st Thursday, 10:00 am, Virgin Valley Home Care Call Erica at 702.346.7565

Hanford 1st Saturday, 10:00 am, First Christian Church Call Barbara at 559.584.1903 or Debra at 559.585.8054

Reno/Sparks - “Live Life with Passion with MS” 4th Thursday, 5:30 pm, The Continuum-Reno 2nd Thursday, 5:30 pm, More To Life-Sparks Call Heidi at 775.240.1085

Tehachapi 2nd Monday, 5:00 pm, Tehachapi Moose Lodge Optional “Dinner on the Grill” $3.50 & up Call Linda at 661.822.7440

Reno/Sparks 3rd Thursday, 10:00 am Northern Nevada Center for Independent Living Call Mary at 775.772.3404

Visalia 2nd Saturday, 10:00 am, Kaweah Delta Rehab Call Sandra at 759.759.5867

Truckee 2nd Thursday, 5:30 pm, Tahoe Forest Hospital Cafeteria. Call Rick at 530.550.0654 or BonniSu at 530.993.4499


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 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 Southern Nevada 2110 East Flamingo, #214 Las Vegas, NV 89119 702.736.1478

www.MSconnection.org

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

National MS Society, Southern California & Nevada Chapter's fall 2013 issue of MS Connection  
National MS Society, Southern California & Nevada Chapter's fall 2013 issue of MS Connection  

National MS Society, Southern California & Nevada Chapter's fall 2013 issue of MS Connection quarterly newsletter

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