national ms society, southern california & nevada chapter's summer 2013 issue of ms...

NationalMultiple SclerosisSocietySouthern California& Nevada Chapter

SUMMER 2013 SOUTHERN CALIFORNIA & NEVADA CHAPTER

MS CONNECTION NEWSLETTER

INSIDE THIS ISSUE

06GIVING

04RESEARCH

08LIVING WITH MS

13PROGRAMS CONNECTION

HIT THE ROAD FOR MSCHALLENGE WALK STORY PAGE 10

BIKE MS STORY PAGE 11

02 MS CONNECTION: SUMMER 2013

LETTER FROM THE PRESIDENT

FAMILY MATTERSWhen a person lives with MS, there is immediate impact on all who love them. We offer an extensive variety of programs, services and resources for not only the person diagnosed with MS, but also for family members.

• Emotional Support: Connect with a support group (p. 21 - 23) or speak with a professional one-on-one through our counseling program.

• Financial Assistance: Access support for respite care; for emergency needs such as food and utilities; or with special family needs such as school activities or uniforms. (p. 20)

• Education: Attend our teleconferences and in-person programs to learn more about advances in MS research, insurance benefits, handling relationships, and more. (p. 17 -19).

• Social & Recreational Events: Engage and connect with other families with similar experiences at our annual Walk MS, Bike MS, Challenge Walk MS and other fundraising events throughout the year.

• Online Connections: Visit www.MSconnection.org to find live chat rooms, online support groups, additional connection opportunities and tips from the experts.

Families can count on the National MS Society. To learn more about the resources available to you and your family, please contact an MS Navigator at 1.800.344.4867. n

CONNECT WITH US ONLINE:www.nationalmssociety.org/CAL

Like us: facebook.com/MSsoutherncal

Follow us: twitter.com/MSsoutherncal

Watch us: youtube.com/MSSoCalChapter

“MY MS DIAGNOSIS WAS A LOT TO PROCESS. THERE ARE GOOD DAYS AND BAD DAYS BUT DESPITE ANY OF THOSE THINGS, I FEEL IT IS MY DUTY TO GET INVOLVED, RAISE AWARENESS AND FIND A CURE FOR THIS DEBILITATING DISEASE, AND I WILL USE THE PLATFORM I HAVE BEEN GIVEN TO DO JUST THAT.” —COURTNEY

03NATIONALMSSOCIETY.ORG/CAL | 1-800-344-4867

The National MS Society’s scholarship program helps highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. In 2013, the Society awarded over $1 million to 679 scholars, including 22 in the Southern California & Nevada Chapter.

A special congratulations to the 2013 Presidential Scholar, Erin Saito of Carpinteria, who was chosen as one of two top scholars to receive a four-year scholarship. A physically active teenager, Erin was on the high school

varsity softball team, and captain of the varsity tennis and basketball teams. Eyesight problems

and numbness on one side of her body turned out to be MS. Erin was not sidelined by the diagnosis. On the contrary, she continued to excel academically, participate in her beloved sports program and become an active volunteer in Walk MS raising over $3,000 for research. She says she has become more sensitive and compassionate to the needs of others and would like to pursue a career in medicine. She will attend UCLA in the fall as a Biology major. She says she is determined not to let MS change her goals. She has gained valuable insight and a more mature perspective since learning she has MS, which, she says, “would have taken years of experience to acquire.”

Meet all of our Chapter’s scholars and learn how you can support the program at www.nationalMSsociety.org/CALscholarships. n

SCHOLARSHIPS

CONGRATS, GRADS!

NATIONAL MULTIPLE SCLEROSIS SOCIETYSouthern 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—Summer 2013

Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician.

The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.


RESEARCH

PROGRESS AT AAN MEETINGOver 12,000 neurologists and other researchers gathered in San Diego in March to share the most up-to-date research on treating neurological diseases such as multiple sclerosis at the annual American Academy of Neurology’s (AAN) meeting.

Here are a few highlights from the more than 500 MS-related presentations that focused on stopping MS, restoring function and ending MS forever.

STOPPING MSProgressive MS

A small study of an oral blood-pressure medicine, Amiloride, found a reduction of brain shrinkage associated with the disease in 14 people with primary-progressive MS. Further testing in a larger study is now underway. Researchers in a large trial of Gilenya for primary-progressive MS reported good progress in setting up the trial. This is one of several ongoing large studies in progressive MS.

MS Therapies

Results of a study on peginterferon beta-1a (a new form of Avonex) designed to stay in the body longer than the standard form suggest that peginterferon injected every two or four

weeks was effective in reducing relapse rates and the risk of progression of disability. The study is continuing into a second year and the trial sponsor Biogen Idec has announced plans to apply for FDA approval later this year. Another one-year phase III trial found that injections of twice the standard dose of glatiramer acetate (Copaxone) taken three times per week were effective in reducing relapses and MRI-detected disease activity, with no unexpected safety issues.

A large study in France (ENIGM) found that among 200 people who switched from natalizumab (Tysabri) to fingolimod (Gilenya), 32% experienced a relapse during the “washout” interval of 3 to 6 months when no therapy was given. The researchers concluded that switching increases the likelihood of disease reactivation and that the washout period should not be longer than 3 months.

Results of two phase III trials of oral dimethyl fumarate (Tecfidera), approved by the FDA in March, suggest that the treatment begins to take full effect after three months’ use. This

PROFESSOR EBERS (CENTER) RECEIVES THE JOHN DYSTEL PRIZE FROM DRS. TIMOTHY COETZEE AND BRUCE COHEN

STOPPING THE DISEASE RESTORING WHAT’S BEEN LOST ENDING MS FOREVER


effect was sustained over the two-year span of the trials.

Several presentations focused on results from extension phases of completed clinical trials in relapsing-remitting MS. To read more, visit www.nationalMSsociety.org/2013AAN.

Exploring disease activity

An Argentinian study on whether vaccinations can trigger MS attacks found that yellow fever vaccines may substantially increase the risk of MS relapse; therefore, people with MS planning a trip to a region with an increased risk of yellow fever should discuss the risks and benefits of vaccination with their doctor.

A small study in Louisiana found that people with higher levels of glucose were more likely to have higher levels of disability. This important lead needs more study to prove a role for blood sugar in MS progression.

A few studies focused on ways to track disease progression, including one that analyzed serum samples from people with MS who were taking glatiramer acetate (Copaxone). The researchers were able to find antibody profiles that could detect those who responded to therapy and those who did not. Dr. Nicholas LaRocca of the National MS Society described efforts of the newly formed MS Outcome Assessments Consortium to accelerate development of more effective treatments for MS. They will analyze data from completed MS clinical trials and other studies and work with regulatory agencies to qualify a new outcome measure that can more sensitively track the impact of therapies

on disease disability and progression in future trials.

RESTORING FUNCTIONSeveral studies focused on the benefits of exercise for brain function and MS symptoms such as fatigue, while others looked at how the brain can adapt to MS damage. To read blog posts by MS researchers on these and other studies, visit blog.nationalMSsociety.org.

A study on CCSVI did not find a significant difference between 61 people with MS and 20 people without MS when technicians trained in CCSVI assessment used various ultrasound techniques to detect the condition. The first results of another study of controlled endovascular treatment at six months found no adverse events, but also no sustained improvement in venous outflow.

ENDING THE DISEASE FOREVERSeveral reports focused on risk factors for MS, including one indicating that dietary salt may stimulate activity of key immune cells involved in MS attacks. Read more at www.nationalMSsociety.org/dietarysalt.

For his extensive work on understanding MS, including the importance of genetic factors in who develops the disease and how genes interact with environmental factors, Professor George Ebers was this year’s recipient of the John Dystel Prize for MS Research, given jointly by the Society and the AAN.

Read scientific summaries on the AAN’s website at www.abstracts2view.com/aan. n




GIVING

LIFETIME RETURNClaudette and Henry Taylor learned of the Society when she first experienced symptoms of MS in 1973. When her symptoms progressed and they decided it was time to try a wheelchair, they reached out to the Society. Henry said, “We were lent a power wheelchair, my wife’s first which she had for years. The fact that the Society came to our assistance stuck with me.”

The Taylors wanted to find ways to give back. After volunteering and donating generously for years, they chose the Society to establish four charitable gift annuities (CGA) as a way to express their gratitude. Henry explained, “The CGA is a wonderful way of contributing

to whatever cause you want to support while at the same time receiving a personal benefit and ultimately directing the remainder to your designee. We didn’t have anyone we were going

to leave things to, and this is a way to contribute to the effort and have a charitable deduction with a lifetime of return.”

A gift annuity is a simple contract between you and the National MS Society. In exchange for your gift of cash or stock, we make regular fixed payments for life

to you and a second beneficiary, if you choose. You will also receive a partial charitable income tax deduction for your gift when you itemize, partially income tax free payments throughout your life expectancy and capital gains tax savings on appreciated property you donate. Consider a gift that ensures your future and brightens ours. To learn more, contact Diane Sant at 310.481.1108. n

BENEVOLENT BACKERSWe are grateful to the foundation and corporate supporters that contributed $42,000 in grant awards between January 1 – April 30, 2013:

• $21,500 from the Friends of NMSS for general operating support of the Northern Nevada Field Office.

• $8,000 from Genzyme for the MS Research Symposium held in February 2013.

• $7,500 from the Employees Community Fund of Boeing California to support the Educational Scholarship Program for Youth Affected by MS.

• $5,000 from The Dale and Edna Walsh (DEW) Foundation for general operating support of the Northern Nevada Regional Office.

• $2,500 from The Towbes Foundation to support salary costs for the Channel Islands Field Office’s Program Director.

Claudette & Henry L. Taylor, Jr.


The Golden Circle campaign was created in 1993 as the Southern California & Nevada Chapter’s elite annual gift campaign. Since that time, individuals, foundations and corporations have contributed millions of dollars to:

• accelerate the development of more effective MS treatments

• search for the cause and cure of the disease

• expand the Chapter’s local programming for people with MS.

Members of Golden Circle carry on a tradition from the Society’s founder, Sylvia Lawry, who raised $100,000 in 1946 from friends and family members in her community to try to find an answer to the puzzle of this unpredictable disease. Golden Circle donors lead by example, making a powerful statement that their commitment to finding a cure and to improving the lives of those with MS is persistent and passionate. Please consider joining Golden Circle with an annual membership gift of $1,000 and help us continue moving this important work forward. All gifts to Golden Circle directly support the MS community and can be paid annually or by monthly installment.

Golden Circle members receive special access to events with updates on research progress and the opportunity to connect with other members.

On February 21, the Chapter hosted a Golden Circle research reception at the Ritz-Carlton Marina del Rey. The evening featured a presentation from Dr. Stephen Hauser, Chair of Neurology at UCSF, who is considered “the pioneer” of MS genetics. Dr. Hauser spoke about the role of genetics and MS, and about the advances in diagnostic tools from the first MRI in 1981 to today, highlighting just how critical technological advances have been for helping to treat MS. In fact, he predicted that 15 different MS treatments would likely be available and in use by 2015.

For more information on supporting Golden Circle or to make a gift online, please visit www.nationalMSsociety.org/cal or contact Elicia Lopez, Development Director, at 310.481.1111. n

GOLDEN CIRCLE

CELEBRATING 20 YEARS OF GIVING

Golden Circle Chair Julie Kaufer and Conrad N. Hilton Foundation Program

Officer Elizabeth Cheung


LIVING WITH MS

LOVE, MARRIAGE AND MSBY SUSANNA REDMER

I met my husband Tim about four years ago after a friend had dared me to give online dating a try. I talked online with him for a bit, and then decided to meet him in person since we both wanted to get to know each other better. I thought I’d then tell him my usual spiel about multiple sclerosis just so he’d know what he was getting himself into.

“You know I have this thing,” I began. “It’s not a big deal, but sometimes I feel too fatigued to do anything. I take an injection, and oh, it’s called MS,” I finished in a hurry. I expected Tim to say something like, “Never mind about you — I want someone to go surfing with me,

run marathons and do adventure biking.” But I never thought in a million years he would smile and say, “Huh, small world. I have MS, too.”

“YOU KNOW I HAVE THIS THING ... IT’S NOT A BIG DEAL, BUT SOMETIMES I FEEL TO0 FATIGUED TO DO ANYTHING. I TAKE AN INJECTION, AND OH, IT’S CALLED MS.”

I remember sitting in stunned silence that the same someone I was interested in was also someone who understood what life was like with MS. Tim knew about the injections, the doctor’s appointments, the fatigue and everything else I experienced daily. I didn’t start dating him because he had MS; I dated him because he was everything I had been looking for. He was intelligent, confident, athletic, a record-setting college runner and kind. After just a few months, we realized that we wanted to spend our lives together. When we said our wedding vows a year later, the phrase “in sickness and in health” had a deeper meaning because sickness could strike at any time due to the unpredictability of MS. And soon after we got married, it did.

Within the year, our son, Will, was born. I remember wondering if I could handle the fatigue, the stress of childbirth and coping with a new little baby who could do nothing for himself. I was scared, but my husband said something to me that I’ll never forget. He said, “You’ll always have me at your side.”

SUSANNA AND TIM’S WEDDING

NATIONALMSSOCIETY.ORG/CAL | 1-800-344-4867 09After a few months, I saw that friends who had children around the same time were starting to bounce back, training for half marathons and triathlons, and going back to work. On my side, I was having an MS relapse, on top of the strain of giving birth and being a new mom.

“I WORRIED THAT MY SON WOULD MISS OUT ON THINGS BECAUSE I COULDN’T DO THEM, AND I WAS UPSET THAT I HAD YET ANOTHER RELAPSE.”

I felt isolated in my daily struggles. I worried that Will would miss out on things because I couldn’t do them, and I was upset that I had yet another relapse. Through it all I had my husband at my side, and still do. I also had a team of doctors who cared about me and helped me to recover.

Since my last relapse, there are some things I can’t do anymore, but I can look at my son and find joy through the way he experiences life. And I also came up with the idea of Café MoMS during my recent relapse. It’s a support group where mothers who have MS and who have children of any age can go to express their concerns, listen to new research and find support in a nurturing environment with people who know what it’s like to walk in your shoes. Most of all, at Café MoMS, mothers find they’re not alone. n

Susanna Redmer is a freelance reporter and the author of the young adult historical fiction novel, The Time the Earth Shook.

DON’T GO IT ALONEIf you’re feeling isolated, reach out. Call 1.800.344.4867 to find a support group near you, or call MSFriends at 1.866.673.7436 to talk to a peer with MS.

Moms with MS can join the “Moms with MS” group at www.MSConnection.org and find resources for families at www.nationalMSsociety.org/FamilyMatters.

Plus, turn to page 17 to learn more about our “8 Hours to a Lifetime of Relationship Satisfaction” getaway weekend for couples. See page 18 for our summer teleconference on “Intimacy & Family Planning.”

THE REDMER FAMILY


SIG”

CHALLENGE WALK MS

BECAUSE I CAN There are a number of reasons why I participate in Challenge Walk MS, but the most important is because I can! There are thousands of people who are not able to, and who have the same disease I was diagnosed with back in 2009. I have MS; MS does not have me, and I intend to continue walking every year. I walk to raise awareness. I walk to raise funds so researchers can find a cure! I walk so

that assistance will be there for those who need it. There is no road map to show how this disease progresses, as each case is unique. I walk so that one day we don’t need a key for this map.

~ Keith Baker, First Year Walker, Lifetime Member

CARLSBAD TO SAN DIEGO: SEPTEMBER 27-29, 2013

Enjoy an all-inclusive weekend that travels the beautiful coastline

of Southern California. Enjoy comfortable accommodations at

the Marriott, all while experiencing the journey of a lifetime.

3 DAYS 50 MILESCONNECT TO END MS

MYMSCHALLENGE.COM

“

THE BEAT MS DANCE WALKSo You Think You Can Dance’s Courtney Galiano had a fantastic time at her first Walk MS event last year, shortly after her diagnosis in 2011. But she wanted to find a way to marry the fun that she had at Walk with the passion she has for dance.

Along with her friend and co-chair, Philip Byron, Courtney is bringing together artists, dancers and people who want to do something

about MS NOW for the 1st annual The Beat MS Dance Walk on September 22, 2013 at University High School Los Angeles. Join in on the newest craze – dance walking – and help end multiple sclerosis. Enjoy dance walking to awesome music, lessons from professional dancers, and great performances. The event will end with a choreographed group performance, featuring YOU, which will be videotaped and posted to raise MS awareness.

Learn more & register now at www.thebeatMS.com.


BIKE MS

HARD AT PLAY Matt Bullard was diagnosed with MS in August 2012. Two days after his diagnosis, he learned about Bike MS. Since a 100-mile ride had always been something Matt aspired to do, he was excited at the thought of participating in a challenge that would be so personal to him.

After announcing his diagnosis, Matt contacted his friends and family on Facebook and asked everyone to consider joining his Team SCV. Matt set his fundraising goal at $5,000 and asked everyone he knew to donate. Friends and family were very generous and the team of 13 raised over $6,000 last year. This year, he already registered 24 teammates and their goal is to raise at least $10,000.

For Matt, Bike MS is an event that he looks forward to all year. The event brings loved ones together to bring awareness to the disease and is also a way to spend a weekend doing a fun, physical activity together as a team of friends, all while supporting a wonderful cause. Matt’s new motto? “Hard at play while the symptoms are away!”

Mile after mile, Bike MS is a ride like no other. Together we build lifelong connections, achieve individual and collective milestones, and help people with MS to move their lives forward. Every mile we ride and every dollar we raise make a difference to the 19,000 people 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 as a cyclist, virtual rider, or volunteer for one of these unforgettable rides! n

Bike MS: Coastal Challenge 2013October 12 - 13 >> Ventura, CA 30 - 160 miles >> www.bikeMSsocal.org Bike MS: Vegas Challenge 2013November 9 - 10 >> Las Vegas, NV 30 - 150 miles >> www.bikeMSnevada.org

TEAM SCV


WALK MS

COMMUNITIES CONNECTINGThis spring, more than 17,000 people in our local communities joined together at 13 Walk MS events to show their support of friends, family and neighbors living with MS. Walk MS has already raised over $2.1 million to make sure there’s always someone there to answer questions about MS; ensure there is financial support to deal with the burden MS may cause; help families affected by MS to connect through educational and wellness classes; provide professional counseling and support groups, and fund cutting-edge research efforts worldwide for better treatments and a cure.

THANK YOU to everyone who participated, donated, and volunteered! Huge thanks also to our generous sponsors, especially Presenting Sponsor Wells Fargo for their $75,000 contribution and Diamond Sponsors Bruce’s Gourmet Catering, Halloween Adventure, Sam’s Club, Southern California Gas Company, and Stamoules Produce Company. Step by step. Dollar by dollar. We are moving closer toward a world free of multiple sclerosis! n

CAN’T WAIT FOR WALK MS 2014?You don’t have to! Keep up the great fundraising or make a donation to support the 2013 event at www.WalkToEndMS.org to help us reach our $2.5 million goal. Walk MS 2013 donations will be accepted through September 30th, and then Walk MS 2014 registration will open later this fall.

Or join one of our terrific fall Walk MS events:

09.21.13 South Lake Tahoe, Camp Richardson

10.26.13 Bakersfield, Yokuts Park

Register now at www.WalkToEndMS.org.

PROGRAMS CONN

ECTIO

N

Couples living with MS have unique challenges. Explore ways to develop a team approach to living well with MS. This interactive and energetic workshop will focus on enhancing your communication and problem solving skills, renewing commitment in your relationship, and discovering a sense of power over your MS.

This romantic getaway weekend includes 2 days of interactive group activities that will enhance and improve your ability to communicate with each other. During day one, we will discuss the concept of healthy open communication and how these practices can enhance any relationship.

Then you will be able to enjoy an overnight stay at a luxurious hotel. We will come back together for day two where we will learn how to put into practice the ideas explored in day one.

This workshop is open to any couple in a committed relationship, regardless of marital status.

Cost: $45 per couple, includes a Saturday night hotel stay, continental breakfast and lunch Saturday, and breakfast on Sunday.

Fallbrook, CA Saturday & Sunday, September 21 & 22 10:00 a.m. – 3:00 p.m. Saturday 9:00 a.m. – 12:00 p.m. Sunday Pala Mesa Resort

SIGN ME UP! If you have any questions or to add your name to the list, please call Mary Ann Holm at 310.479.4456 ext. 66121.

8 HOURS TO A LIFETIME OFRELATIONSHIP SATISFACTION



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. Pre-registration is required for each program. Prior to the teleconference, you will receive a toll-free dial-in number.

Sign me up! 800.344.4867 www.nationalMSsociety.org/CALcalendar

RELATIONSHIPSIntimacy & Family Planning Thursday, August 1, 6:30 – 7:30 pm

While the challenges of MS may at times feel overwhelming, many couples have found successful and satisfying ways to deal with the intrusion of MS in their lives. In fact, confronting the challenges of MS draws many partners closer together, deepening their sense of connectedness and commitment. Learn more about some of the barriers that MS can create for couples and hear helpful pointers on how to work around them. Better understand the neurologic and psychological

impact of MS on sex and intimacy, what can be done to improve intimacy, and possible implications of MS on family planning.

EMOTIONAL WELLNESSLife Coach and Psychotherapist Catherine Freemire, LCSW, leads discussions on a new topic each month.

Positive Self Care for Your Body Tuesday, July 2, 2:00 – 3:00 pm or Tuesday, July 19, 12:00 – 1:00 pm

How do you feel about your body? How are your feelings and struggles different or similar to before you were diagnosed with MS? Gain simple, positive ways to practice good self-care of the body, including both the inside health of your body as well as your outer appearance.

Meaningful Time Management Tuesday, August 20, 2:00 – 3:00 pm or Tuesday, August 27, 12:00 – 1:00 pm

Our biggest and most precious, non-renewable resource in life is our TIME. How we spend our time is how we spend our life. Learn some basic time management

techniques that make time your ally rather than your enemy. No more rushing. No more cutting corners. No more self-imposed stress. Design a schedule for yourself that is balanced and meaningful.

15Asking For What You Want: The Practice of Assertive Communication Tuesday, September 10, 2:00 – 3:00 pm or Tuesday, September 17, 12:00 – 1:00 pm

Learn ways to ask for what you want in an assertive way with spouses, friends, family and health care professionals. We are often taught not to make waves, yet this can lead to not getting our needs met. It can also lead to feelings of victimization. Learn the philosophy behind assertive communication and skills that will help you be assertive without being aggressive, passive or passive-aggressive.

LIVING WELL WITH MSDiscover what YOU can do to positively impact your health and well-being:• Develop a healthy eating and exercise

program designed specifically for you• Learn lifestyle strategies to make changes

to better manage MS and its symptoms• Connect with others like you in a

comfortable environment• Gain open access to various MS health

experts

Living Well with MS is a 10-week online course designed for those who are living well with the disease and want to continue to enhance their overall well-being. Expand the necessary tools and knowledge you need to help diminish the effects of the disease and build a personal plan for living well with MS.

Each week, you’ll gain access to a new, highly interactive module that contains a wealth of information on topics including treatment options, symptom management, career and employment, relationships and much more. The online class includes activities, discussions and connection to many resources.

Fall session begins mid-September. Pre-registration is required. Visit livingwellwithMS.com to learn more or sign up or call Tiffany Jordan at 310.479.4456 x66130.

NATIONALMSSOCIETY.ORG/CAL | 1-800-344-4867

EMPLOYMENT & MSWhat Next? The FAQs of Employment, Benefits and Entitlements Tuesday, September 10, 6:30 – 8:30 pm

When is it time to stop working? What are my employer benefits? What state and federal benefits may I be entitled to? What about health insurance? Get answers to these questions from our featured presenter, Audrey Goldman, MA, LMFT who worked for the Chapter for 28 years in the areas of program management, professional education and individual and family counseling. Audrey has assisted many people in understanding the process and eligibility requirements for benefits and entitlements.

For this employment teleconference only, to register, please contact Mary Ann Holm at 310.479.4456 ext. 66121.


FINANCIAL ASSISTANCEWe 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 CAREMS 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: In-home 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.

SUPPORT SERVICESSherak 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 MEMBERSGrisanti 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.


SELF HELP GROUPS

CONNECTCommunity Self-Help GroupsPlease 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 GROUP3rd 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 20s - 40s. Friends & family welcome. 2nd Saturday, 10:00 am, Rancho Los Amigos Rehabilitation Center. Contact Sarah at 562.401.7622 or Beth at 917.626.7517

GLAMS (Gay and Lesbian Support Group) 3rd Saturday, 1:00 pm, Location varies. Contact Ronni at 626.392.4321 or [email protected]

17Lakewood/Long Beach 3rd Sunday, 1:00 pm (no meetings in July/Aug) 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 Era at 661.297.6887

South Bay/Harbor City 3rd Thursday, 4:00pm, Gardena Mayme Dear Library. Call Pattie at 310.769.0694

Tarzana – 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 Nancy at 310.827.5714

West LA – Men’s Group 3rd Tuesday, 6:00 pm, National MS Society Call Larry at 310.926.1641

18

INLAND EMPIRE/COACHELLA VALLEYHemet 1st Friday, 10:00 am, Hemet Public Library Call William & Mary at 951.809.3651

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 760.238.8200 or Rebecca at 760.340.0651.

Palm Desert 2nd Thursday, 12:00 pm, Pizza Hut Call Richard at 760.899.4174

Palm Springs 4th Saturday, 12:00 pm, Mizell Senior Center Call Kristin at 949.292.5304

Rancho Cucamonga - Moms with MS 3rd Tuesday, 12:00 pm (no meetings in June/July) Rancho Cucamonga Resource Center. Call AnaMaria at 909.463.0334 or Kim at 909.904.0352

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 (no meetings June/Jul) Trinity Lutheran Church. Call Denise at 909.519.4410, Tammy at 909.792.6518, or Jacqueline (Spanish-speaking) at 951.302.3529

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

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

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

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 Center. Call Tina at 805.581.2264

Ventura Last Friday, 11:30 am, Carrow’s. Call Vincy at 805.340.9627 or [email protected]

MS CONNECTION: SUMMER 2013

19Upland Last Wednesday, 10:00 am (no meetings in June/July) Calvary Chapel. Call Tammy at 909.792.6518 or 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

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

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. 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 - “MS Invincibles” 3rd Thursday, 2:00 pm, South Reno Library Call Chris at 775.560.1215

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

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

SAN JOAQUIN VALLEYBakersfield 1st Thursday, 7:00 pm, HealthSouth Rehab Hospital. Robert at 661.587.1445

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

Bakersfield - Family Support Group 4th Saturday, 10:00 am, National MS Society Call Kim at 661.321.9512

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

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

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

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

Tehachapi 2nd Monday, 5:00 pm, Tehachapi Moose Lodge “Dinner on the Grill” $3.50 & up 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, #320Ontario, CA 91761909.949.1363

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, #214Las Vegas, NV 89119 702.736.1478

7th annual Dinner of Champions Northern Nevada

honoringThe Rose and Glenn Families

Thursday, August 22, 2013The Silver Legacy Resort Casino, Reno

Call Linda at 775.827.4257 for details and tickets.

2nd annual Dinner of Champions Fresnohonoring

The Stefanopoulos Family of Stamoules Produce Company

Wednesday, September 18, 2013Pardini’s, Fresno

Call Fotini at 559.439.2154 for details and tickets.

national ms society, southern california & nevada chapter's summer 2013 issue of ms...

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