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SUMMER 2013 Pacific South Coast Chapter

MS Connection Newsletter

ARE YOU READY FOR A GREATER CHALLENGE? Bike MS (Page 6) & ChaLLENGE WALK MS (PAGE 17) CAN TAKE YOU THERE.

INSIDE 04 THIS ISSUE

is it harder to work with MS?

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12

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mark your calendars for upcoming events

2013 scholarship award winners

progress on ms therapies


02

MS connection: SUMMER 2013

A MESSAGE FROM OUR BOARD CHAIR

LET’S BE EXTRAORDINARY Multiple sclerosis is a challenge that we are committed to overcoming! This summer, I challenge YOU to be EXTRAordinary. To be extraordinary, we have to do EXTRA. Here are a few EXTRAORDINARY ideas.

take your involvement to the next level. Join in as an event participant, volunteer, or donor!

Connect with us online: MSpacific.org Like us: facebook.com/MSpacific Watch us: youtube.com/MSpacific

• Try something new! There are new events in our chapter this year to raise money for our MISSION. I am personally looking forward to MuckFest MS [www.muckfestMS.org], a 5-mile obstacle course run, and can’t wait to find some friends to come out and get messy for MS! • Go beyond! Make your team bigger, give a little more, or do an EXTRA event. The Bike MS Bay to Bay Tour [page 6] is an awardwinning ride that pushes riders to accomplish what they may not believe possible! • Bring someone EXTRA along. Share your story about why you are committed to MS with someone new and invite them to join you! Share the names of potential donors with our staff so we can recruit them into the cause too! To achieve our goal to end MS forever, we must find ways to be extraordinary. I look forward to hearing your stories about what you’ve done to accomplish more! Cheers and here’s to an extraordinary summer!

On the Cover: Bike MS participants enjoy beautiful coastal views as they pedal to create a world free of MS. Challenge Walk MS participants enjoy an inspirational weekend raising money and awareness.

Cynthia Perazzo Chair, Board of Trustees


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nationalmssociety.org | 1-800-344-4867

RESEARCH

TOP THOUGHT LEADERS SHARE INFORMATION AT AAN In March, The American Academy of Neurology (AAN), an international professional association of neurologists and neuroscience professionals, held their annual conference in San Diego. Society staff hosted networking events and a Golden Circle Reception for local donors to meet and hear from the top names in MS research. Our expert panel shared information from recent MS studies including: • Ellen Mowry, MD, MCR - Assistant Professor of Neurology, Johns Hopkins University –the latest research on Vitamin D and MS. • Anne Cross, MD - Professor of Neurology, Washington University School of Medicine – her career as a Fellow funded by the National MS Society • Timothy Coetzee, PhD- National Multiple Sclerosis Society’s Chief Research Officer International efforts being made to better understand and treat MS.

National Multiple Sclerosis Society Pacific South Coast Chapter 12121 Scripps Summit Drive, Suite 190 San Diego, CA 92131 1-800-344-4867 Board Chair: Cynthia Perazzo Chapter President: Richard V. Israel Editor & Design: Jessica Ishikawa Associate Editor: Leslie Roach © 2013 National Multiple Sclerosis Society, Pacific South Coast Chapter

• Gavin Giovannoni, MD, PhD - Reader at the Institute of Neurology, University College London and Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery, Queen Squareinvestigation into nervous system repair and development of drug treatments for people living with MS. The Society is committed to raising $250 million for MS research by 2016 through our No Opportunity Wasted (NOW) campaign in hopes to end MS forever. n

To learn more about the latest in MS research, visit nationalMSsociety.org/research. To make a research gift, contact Erich Foeckler at (760) 448-8412 or erich.foeckler@nmss.org.

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


04 NEWLY DIAGNOSED

is it harder to work with MS?

MS connection: SUMMER 2013 Memory issues may impact employment

Julie Stachowiak, PhD

Many people with multiple sclerosis find it difficult to continue working, even in the early years of the disease. Tasks that seemed challenging before MS can become seemingly insurmountable afterward. The fluctuation of daily symptoms and unknown levels of future disability make mapping out a strategic career path a challenge, to say the least. We simply do not know what the future holds around our ability to perform a job.

“I am able to work more when i feel good, less when i feel bad, and take a quick nap if needed.” I am lucky enough to be able to work from home. I am able to work more when I feel good, less when I feel bad, and take a quick nap if needed. There are days when I can work a full day, but there are many days when I do not feel productive at all — when even looking at the computer screen feels like torture.

I know that as each year has gone on, the problems that I have had in trying to work efficiently seem to get worse. However, recent research indicates that some people who are newly diagnosed or have had an episode of a clinically isolated syndrome may already need to adjust their time at work. Researchers in the Netherlands wanted to look at how MS-related cognitive dysfunction affected work in people who are recently diagnosed with MS. In the Cognition and Socio-Economics (COGNISEC) study, the researchers studied 45 people who had been diagnosed with MS or had a clinically isolated syndrome within the past two years and have been on disease-modifying therapy for less than six months or not at all.

what they found: n

People with higher levels of fatigue and disability all decreased their working hours within 12 months following diagnosis.


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n

Lower long-term memory scores correlated with a lower number of hours and days spent working during the week.

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People who scored lower on “focused attention” and “speed of memory” were more likely to say they “wished to work less.”

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Scores on tests assessing depression (Beck Depression Inventory) did not correlate at all with quantity of working hours.

While its findings need to be replicated in larger studies, so far this research shows that cognitive dysfunction can negatively impact the capacity to work, even in the very early stages of MS.

Working a balance What does this mean? Let’s face it, even jobs that we love can lose some of their luster when we have to negotiate symptoms that add to our physical disability. While it is tempting to keep pushing ourselves to do more and overcome some of these challenges, it is important to remind ourselves that we may have very real cognitive symptoms related to our MS that are impacting our abilities to work the same way we did in the past.

“... so far this research shows that cognitive dysfunction can negatively impact the capacity to work, even in the very early stages of ms.”

On the other hand, many people with MS continue working long after their diagnosis. Disease-modifying therapies, new technologies, better symptom management, legal employment protections and community resources can help you remain in the workforce — and education and preparation can be your most powerful tools for success. Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and ms.about.com. Originally posted at blog. nationalMSsociety.org.

tools to work If you’re struggling to keep up at work, but aren’t ready to throw in the towel just yet, visit www.nationalMSsociety.org/ employment or call an MS Navigator at 1-800-344-4867 to learn more about your options and get connected with employment resources in your area. The Job Accommodation Network at www.askjan.org also offers information on a range of subjects for working people with disabilities.


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MS connection: SUMMER 2013

a personal challenge

TAKING Bike MS TO THE NEXT LEVEL When invited to join the Bike MS ride by his sister, Jay McCabe was more motivated by riding 150 miles than anything else. Fortunately, that bike to changed and after eight Bike MS events, createquickly a world plusfree numerous of MS fundraisers, Jay is now co-captain of Howard’s Team, a Board of Trustees member and a true advocate of our cause. Each year Jay participates in the Bike MS ride, his close friend Bob Moore makes a donation “in the name of Howard Gray,” Bob’s good friend with MS. After learning more about Howard, and with three years of Bike MS tours under his belt, Jay felt like he could do more. With Jay and Bob teaming up as co-captains and Howard’s willingness to lend them his name for their efforts, they formed Howard’s Team in 2008. With his knack for fundraising, Jay created the Million Dollar Bargain, a commitment to raise $1 million for the Society. “Our team motto is one of Howard’s favorite sayings – deliver everything they bargained for and a little bit more.” Building on that motto created their fundraising challenge and in five years, Howard’s Team has already raised $352,000. Jay recognizes the importance of building a team environment. As co-captains, Jay and Bob

“As with any healthy team environment, people inspire each other to do more. That’s our vision on Howard’s Team: Be inspired, create a better world, a world free of MS.” - Jay McCabe both want to “create an environment that is welcoming to everyone, including cyclists of all abilities, virtual riders and volunteers.” By organizing team outings like participating at Walk MS or hosting monthly team rides and BBQs, Jay hopes these events will inspire members to do more on their own. If you think Jay’s done enough, think again. After the 2012 Bike MS Tour, Jay was invited to join the Board of Trustees. Honored by this offer, he accepted and explains, “I am inspired by my fellow board members and I am hopeful that I can make a positive contribution to the organization in this role.” It is individuals like Jay who make our mission a success. Lean more or register for this year’s ride on October 19 & 20 at biketofinishMS.com. n


to register for or get more information about any of the events listed, as well as learn about additional events, visit http://calendar.MSpacific.org or call 1-800-344-4867 (1-800-FIGHT-MS) and press “1.”

Mark your calendar

local events 2013 Orange County MS Research Symposium Saturday, July 13 8:30am-12:30pm DoubleTree Hotel Santa Ana-OC Airport 201 E. MacArthur Blvd., Santa Ana Learn about updates in new MS medications and how MS affects “Below the Belt.”

Teleconference: Intimacy & family planning Thursday, August 1 6:30-7:30pm Teleconference While the challenges 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. Please join us to learn more about the barriers that MS can create for couples and learn about helpful ways to work around them.

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MOVING forward: Program for the newly diagnosed Saturday, August 17 8:30am-12:00pm Courtyard by Marriott 8651 Spectrum Center Blvd., San Diego If you have been diagnosed with MS in the last three years, this is a program designed for you. Learn about treatment options from local neurologist, Dr. Chippendale, and learn about the emotional and physical aspects of a new diagnosis from other community experts.


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If you would like more information about support groups in your area, call 1-800-344-4867, and press ‘1’ or contact a Listed leader.

SELF-HELP GROUPS ORANGE COUNTY

Anaheim: En Español Familiares y amigos bienvenidos. La segunda martes de cada mes. Anaheim Adventist Church 900 S. Sunkist St, 6:30 - 8pm Rosa Ferreras 714-758-0829 rosam58@me.com Susana Pérez 714-235-7570 sueperezg@yahoo.com Brea 1st Friday of the month, 10am - 12pm Jim Langdon 714-392-2052 jameslangdon@att.net Corona Del Mar: Minimal Symptoms/Newly Diagnosed 3rd Wednesday 1:30 - 3:30pm Sherri Brash 714-846-2064 SherriB@socal.rr.com Santa Ana: Man to Man 1st & 3rd Wednesday 10am-12pm Mike Milne 949-215-8502 mcmilne@cox.net Jack Santos 949-786-3421 jackandlinda1948@gmail.net Dana Point: Minimal Symptoms/Newly Diagnosed 4th Thursday, 10am - 12pm Jerry Dowd 949-584-4619 gtdowd@gmail.com Susan Watson 949-493-1299 susanwatson2010@gmail.com Fullerton: Christian MS Support Group 2nd Tuesday, 7:00pm - 8:30pm Sara Minton irvinedrama@yahoo.com

Huntington Beach: Minimal Symptoms/Newly Diagnosed 2nd Wednesday, 10am - 12pm Jeanne Archibald 714-842-7198 novajeanne2@yahoo.com Priscilla Wolz 714-846-6526 Huntington Beach: Working with MS 1st Tuesday, 6:30 - 8:30pm Laurie Cable 714-969-8298 lderble@aol.com Karen Patterson 714-377-4006 Irvine: Walkers & Rollers 2nd & 4th Wednesday 10am - 12pm Jack Santos 949-786-3421 jackandlinda1948@gmail.net Bonnie Richmond 949-677-4272 sambon@pacbell.net Laguna Hills 1st Tuesday, 10am - 12pm Francine Grasso 949-278-6935 frannydo@gmail.com Karen Harlas 949-498-9583 Lake Forest: MS with Christ 3rd Monday, 6:30 - 8pm Bill Bisch 949-218-5020 Cathy Varela 949-842-2296 Midway City 1st & 3rd Tuesdays 10am - 12pm Pat Howard 714-968-0277 Linda Logan 714-374-0430 lindajohnson6735@yahoo.com Carolyn Cassell 714-963-8624 carolyncassell7@yahoo.com

Mission Viejo: Minimal Symptoms/Newly Diagnosed 2nd Wednesday, 6:30 - 8pm Jerry Dowd 949-584-4619 gtdowd@gmail.com Susan Watson 949-493-1299 susanwatson2010@gmail.com Newport Beach 3rd Sunday, 2 - 4pm Harriet Pavidis 714-839-5529 ppavidis@socal.rr.com Stanton/Los Alamitos 1st (Stanton) & 3rd (Los Alamitos) Tuesday 12:30 - 2:30pm Rosa Ferreras 714-758-0829 rosam58@me.com Yorba Linda: Family & Friends Welcome 2nd Monday & 4th Friday, 10am - 12pm Kathy Kelby 714-525-0686 kkacacia@aol.com Rob Lammers 714-990-2933 robert.retired@hotmail.com

SAN DIEGO

Carlsbad: Newly Diagnosed 1st & 3rd Saturday, 12 - 1pm carlsbadselfhelpms@gmail.com 760-448-8403 Chula Vista: En Español Llame para más información. Fernando Palomino 619-691-7964


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nationalmssociety.org | 1-800-344-4867

Chula Vista St. Marks Lutheran Church 850 Hilltop Dr. 3rd Wednesday, 11am - 1pm Susan Lipp 619-426-0930 sjlipp@yahoo.com Bonnie Kuhn 619-737-9262 Encinitas San Diego County Credit Union Community Room 501 North El Camino Real 1st Thursday, 6 - 7:30pm Melinda Brizendine 760-944-4549 melindabrizendine@gmail.com Escondido Joslyn Senior Center, Room 5 210 Park Avenue 3rd Wednesday, 1 - 3pm Beth Bradsher 760-747-9096 sbbrad@cox.net Michele Easterling 760-805-6390 m.easterling68@gmail.com Escondido: Christian Group HopeKeepers Escondido 4th Saturday, 11am - 1pm Cross Connection Escondido 1675 Seven Oakes Rd. Room 4 Jim Johnston 760-746-4279 hopekeeperjim@gmail.com Oceanside Oceanside Library 3861 Mission Avenue 2nd Wednesday, 12 - 2pm Juanita Hamilton 760-754-1911 juanita.h@cox.net Poway Weingart Center 13094 Civic Centre Drive 1st Tuesday, 6:30pm Peggy Green 858-748-4009 pegjean@cox.net

Ramona 2nd Tuesday, 11am - 12pm Van Reeder 760-789-9129 San Diego: I Can’t Remember Group National MS Society 12121 Scripps Summit Drive 1st & 3rd Wednesday, 11am 12:30pm David Ries 619-997-3483 dkries@gmail.com San Diego (Clairemont/La Jolla) Denny’s Restaurant 4280 Clairemont Mesa Blvd. 1st Thursday, 9:30 - 11:30am Jeanne Delaney 858-279-9644 Sharon Glickman 619-226-2883 sjg2@att.net San Diego: Men’s Group Kaiser Education Center San Diego 10990 San Diego Mission Road 1st Tuesday, 6:30pm Bill Homer 858-571-1867 wchomer@gmail.com San Diego (Mid-City) Kaiser Education Center San Diego 10990 San Diego Mission Road 4th Monday, 2 - 4pm Stephanie Russell 619-224-6156 garyptloma@cox.net Spring Valley New Seasons Church 2300 Bancroft Drive 2nd Saturday, 12:30 - 2pm Debbie Centeno 619-460-4123 dcentdeb@yahoo.com

professionally-led support groups in Orange & San Diego Counties Support Group for People Experiencing Progressing MS Symptoms 2nd Tuesday of Every Month 10:00am - 12:00pm Facilitator: Debbie Hornstein, MSW Neighborhood Community Center 1845 Park Avenue Costa Mesa, CA 92627 714-689-9602 Women’s Caregiver Group 2nd Wednesday of Every Month 6:30 - 8:00pm Facilitator: Deborah LeFevre, MFT National MS Society Costa Mesa Office 3000-C Airway Avenue, Suite 125 Costa Mesa, CA 92626 (714) 689-9602 Caregiver Support Group 3rd Thursday of Every Month 6:30-8:00pm Facilitator: Seraphina Galante, MSW, Family Consultant Southern Caregiver Resource Center 3675 Ruffin Road, Suite 230 San Diego, CA 92123 (858) 268-4432, ext. 112


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MS connection: SUMMER 2013

HEALTH & WELLNESS CLASSES yoga & Pilates Aquatics Costa Mesa Yoga Works 1835 Newport Blvd, #A208 Mondays, 10:45 - 11:45am Dana Point Dana Point Community Center 34052 Del Obispo Road Wednesdays, 8:00 - 9:15am Fullerton Friends in Christ Lutheran Church 2311 E. Chapman Avenue Wednesdays, 10:30 - 11:30am Huntington Beach Yoga Works 301 Main Street Wednesdays, 1:00 - 2:00pm Santa Ana Goodwill Fitness Center 1601 E. St. Andrew Place Fridays, 9:45-10:45am San Diego Addie’s Personal Training Studio 4440 Ingraham St. Sundays, 10-11am $5 per session

Balance & strength Training

La Jolla Ability Rehab Specialists 737 Pearl St, #108 1st, 2nd, 3rd Tuesdays, 6 - 6:45pm Costa Mesa Healthy Balance 1599 Superior Avenue, Suite B Thursdays, 10:30 - 11:30am

Carlsbad: Indoor Waterworks Aquatics 2704 Gateway Road Tuesdays & Thursdays 11:45am - 12:45pm Chula Vista: Outdoor Loma Verde Pool 1420 Loma Lane Thursdays 12 - 1pm El Cajon: Outdoor/Indoor St. Madeline Sophie’s Center 2119 East Madison Avenue Mondays, Wednesdays & Fridays 11:30am - 12:30pm Irvine: Indoor Arthritis Foundation Approved Class Waterworks Aquatics 25 Waterworks Way Tuesdays & Thursdays 10:30 - 11:30am No lift available at this time. San Diego: Indoor Wavehouse 3115 Ocean Front Walk Mondays, Wednesdays, & Fridays 10:30 - 11:30am

To attend any of the listed classes, a waiver is required. Please contact 800-344-4867 to request a waiver today.

in your neighborhood

Fullerton: Indoor Aquatics North Orange County YMCA 2000 Youth Way Mondays, Wednesdays & Fridays 9 - 10am $6 per session La Jolla: Yoga Scripps Memorial Hospital 9888 Genesee Avenue Thursdays, 9 - 10am $10 monthly fee Cardiac Rehab 858-626-6493 San Diego: MS FITT Addie’s Personal Training Studio 4440 Ingraham Street Tuesdays, 5:30pm Thursdays, 12:00pm Saturdays, 11:30am Fee-based class. Call 858-483-2711 for more information. San Diego: Outdoor Aquatics Peninsula Family YMCA 4390 Valeta Street Monday-Friday, 11am - 12pm $5 per session San Diego: Pilates Comprehensive Therapy Service Inc. 5677 Oberlin Dr. Suite 106 Mondays, 12pm Thursdays, 5pm Mandy Johnston 858-457-8419 $10 per class San Marcos: Lebed Method Meadow Lark Community Church 1918 Redwing St. Tuesdays, 10am Diana Dean-Naú 760-809-9176 $5 per class


nationalmssociety.org | 1-800-344-4867

A COMMUNITY COMING TOGETHER

Walk MS raises $1.4 million! During the month of April, over 11,000 participants walked to raise $1,400,000 at Walk MS! Funds raised at Walk MS provide assistance to people affected by MS right here in our community. Thank you to everyone who came out and helped make Walk MS a success! A special thank you to all of our Walk MS sponsors who supported the event with cash to underwrite expenses, and donations of goods and services allowing the Society to contribute more towards creating a world free of MS. Title Sponsor

Presenting Sponsors

Platinum Sponsors

Gold Sponsors

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MS connection: SUMMER 2013

DO IT YOURSELF FUNDRAISING

Mitch & Steve’s Excellent adventure The “Wave Goodbye to MS, Paddle for the Cure” is the brainchild of two friends making a difference. Mitch Murphy and Steve Bettis, friends since childhood, grew up in Ocean Beach. They shared a love for the ocean and surfing. Their bond went beyond youth and surfing. Both men started their careers working together, sharing a strong bond of brotherhood. As the years went by, their friendship drifted apart as both men were busy with careers and family. In 2006 Steve was diagnosed with MS. By 2010 his career and surfing ended. He had been thinking about what he could do for MS. Something that would make a difference in the lives of others. Steve wanted to combine a fundraiser with his passion for surfing. Around the same time, Mitch was diagnosed with diabetes which would soon end his career. He took up surf photography as well as becoming involved with the chapter, volunteering to do event photo shoots. Not having seen each other for some time, Mitch and Steve reunited. Imagine their surprise as they found a shared connection; multiple sclerosis. “Mitch is a great motivator” Steve says, “He got me thinking and we started planning Mitch and Steve’s Excellent Adventure… ‘WAVE GOODBYE TO MS, PADDLE FOR THE CURE.’”

“What you do makes a difference, and you have to decide what kind of difference you want to make.” - Jane Goodall (British primatologist, antropologist, and UN Messenger of Peace) We invite everyone to become a part of this adventure and “Wave Goodbye to MS.” The event will take place October 5, from 7:00am until 12:00pm at the Ocean Beach Pier. For more information, visit wavegoodbye.org. To learn about other community events in our area, or to learn how you can plan your own, visit communityevents.MSpacific.org. n


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nationalmssociety.org | 1-800-344-4867

LIVING WELL WITH MS

PREPARING FOR THE SUMMER HEAT The summer is here and for many of us this means spending more time outdoors and having fun in the sun! For others, it signifies a retreat indoors and rising energy bills. Preparing for the summer can help in managing the heat while reducing sky-rocketing home energy bills. Here are some tips for managing MS heatrelated symptoms and reducing your energy costs: • Consider investing in a cooling garment or item. Companies like Polar Products Inc. offer various cooling products to fit your needs. Cooling vests, hats, neck wraps, and even seat cushions and pillows are available. Access their website to learn more at www.polarproducts.com or call 1-800-763-8423. • Drink plenty of chilled drinks.

• Plan outings earlier or later in the day which tend to be cooler. • Make use of air conditioning. If you need to purchase an air conditioning system to help minimize MS symptoms, the cost may be tax deductible if you have a doctor’s prescription for it. • Find helpful ways to reduce your home energy costs by contacting your local utility company. Both gas and electric utility companies offer a variety of programs to assist people with medical conditions and/ or low income. Southern California Edison (SCE), Southern California Gas Company and San Diego Gas and Electric (SDGE) all have Medical Baseline Allocation programs that can increase your available energy usage for those who qualify based on their medical needs. California Alternative Rates for Energy and Family Electric Rate Assistance (CARE/ FERA) offered by SDGE and SCE provide discounts on monthly bills for those who meet eligibility guidelines. The Southern California Gas Company also has a Low-Income Home Energy Assistance Program (LIHEAP) program available for income qualified individuals which may be able to help pay your utility bill. For more information on resources contact us at (800) 344-4867. n


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MS connection: SUMMER 2013

SUPPORTING THE MISSION

ROCKIN’ IT

Jennifer Armstrong (pictured on the right) is a woman living with MS. She is also a wife, mother, Walk MS participant, Challenge Walk MS participant, and an MS Rockstar. After participating as an MS Rockstar for the past two years, she has stepped up as the co-captain of the RU Rockstars Team for 2014’s event. Learn more about getting involved at MSrockstars.com or call (800) 486-6762, and read Jennifer’s interview below.

What were your first symptoms? Numbness and tingling on my right side. I was 28 years old in 2008. After a CAT Scan and MRI they said that I was a “textbook” case for MS – my age, gender and symptoms. What was your emotional reaction to hearing the diagnosis? Actually, it was a relief. I said, “Ok, now what do we do? What’s the plan?” How did it affect your family? It brought us closer because we now do fundraising events together. I feel like I have some control over the disease and it helped my family rally around me. Do you or your loved ones take advantage of the programs and services the Society has to offer? The online information was extremely helpful when I was newly diagnosed. Knowing accurate information is out there is comforting. When and how did you get started in the MS Rockstar program? I was at the Challenge Walk 2 years ago and my sister and I heard about this new marathon and half marathon training January 2013 program called MS Rockstars. I thought, we can do this!

What do you do to fundraise? The key is to fundraise all year long so it doesn’t seem as daunting. We hold dog washes, garage sales, bake sales, etc. and we have candy sold at our store year round. What would you say to someone who is interested in being an MS Rockstar? DO it! Our motto is “You don’t have to be a runner to be a Rockstar” and that is totally true. There is nothing like everyone cheering for you and yelling “You ARE a Rockstar” while you are running. It’s that extra incentive that keeps you going all the way to the finish line… And then we party like Rockstars! “I am an MS Rockstar! I run because I can and I run for those who can’t.” n


nationalmssociety.org | 1-800-344-4867

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SUPPORTING THE MISSION

TAKING THE CHALLENGE TO TAKE CONTROL Tonetta Harris was at work as a 911 dispatcher for the California Highway Patrol when all of a sudden she couldn’t see out of her right eye. “I’m going blind,” she thought, “I’m only 26, I can’t be going blind.” Within minutes, the vision in her right eye returned. She pressed her fingers to her temples, eager for the pain in her eye to go away. She now knows that she had optic neuritis, a trademark symptom of multiple sclerosis. She describes the next six months of her life as a “mystery” that included visits to several specialists before her neurologist diagnosed her with MS on April 18, 2006. That spring, Tonetta was at a restaurant with a friend when she spotted someone wearing a Walk MS t-shirt. She recalls, “I spoke to them for a while, and promised myself I would do Walk MS every year.” Tonetta kept that promise and since then, her team – Toni Tone –has grown to 122 participants. She admits, “I’ve only put a Walk MS team together, I can’t imagine what it would be like to organize Walk MS, or Challenge Walk. The people at my chapter are truly dedicated – it’s not just their job, it’s their passion.”

Tonetta has participated at Challenge Walk MS (“Toe-Knee Tone”) for two years and says, “At the event, it’s amazing to see all the people. Maybe they only know one person with MS. You see strangers coming together for a common cause, and meet people who become your friends forever.” She’s made another promise: “On the tenth anniversary year of my diagnosis – 2016 – I will do Walk MS, Challenge Walk, and Bike MS,” and sends a thank you to that one person wearing the Walk MS t-shirt who made such a difference in her life. If you’re at Walk MS, or Challenge Walk, make sure you say hello to Tonetta. For her, it’s the connections that make all the difference.

Take the Challenge! Walk 3 days and 50 miles on September 27-29! Learn more at myMSchallenge.com or by calling (800) 486-6762.


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MS connection: SUMMER 2013

FUNDING THE MISSION

Pacific wealth management returns as title sponsor for the MS Dinner Auction The chapter is pleased to announce that Pacific Wealth Management will return for its third consecutive year as title sponsor of the MS Dinner Auction, “A Roaring Good Time to Find a Cure” on November 23, 2013, at Loews Coronado Bay Resort. The annual black-tie gala is regularly Full-Color attended by more than 600 people who bid Reverse on more than 700 silent and live auction items and enjoy a gourmet dinner and live entertainment. Last year’s event raised $460,000 for multiple sclerosis research and programs for people living with MS. Pacific Wealth Management is an independent boutique wealth management firm located in the Del Mar area. Founded in 1998, the San Diego-based firm helps high-net worth individuals, families, corporations and foundations preserve and grow their wealth. The firm utilizes Proactive Asset Management, a proprietary asset management system in which risks are continuously evaluated and assets are actively managed to achieve optimum results. Their model has benefited clients even during the last decade’s most tumultuous market situations.

“We admire the National MS Society and the critical role it provides in support of the communities it serves,” said Mark Hill, CFP®, CDFA, co-founder of Pacific Wealth Management. “The partnership is our demonstration and commitment of support to the San Diego community, and our colleague Justin Reckers.” Justin, Director of Financial Planning at Pacific Wealth Management, lives with MS and serves as a member of the chapter’s board of trustees. He and his twin brother, Ian, were diagnosed ten years apart; Ian in college and Justin in 2008. Tickets begin at $175 per person, and packages with overnight stays are available. For more information, sponsorship opportunities or to purchase your tickets, visit MSdinnerAuction.com, or contact Angela Northrup at (800) 486-6762.

From left: Justin Reckers, Mark Hill, and Jim Kuntz of Pacific Wealth Management with Chapter President, Rich Israel.


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ADVOCACY

MS Activists meet their congressional representatives as the NIH. The Society regards NIH as an invaluable partner to finding a treatment for progressive MS, additional therapies for relapsing MS and a potential cure for the disease.

Legislative visits are an important part of MS activism. MS activists connect with public officials, share their stories related to MS and communicate their needs to make public officials aware of what multiple sclerosis is and how it impacts so many lives. The main purpose of these visits is to make the officials realize how a policy change enhances or hinders the quality of life and how important it is to end MS. This year the federal issues include support for MS research funding in the Congressionally Directed Medical Research Programs (CDMPR) and at the National Institutes of Health (NIH). The CDMRP is a peer-reviewed program that funds high risk, high reward research. It takes prudent measures to ensure that its work is not unnecessarily duplicative from the work done by other research organizations such

We are also requesting support for the Lifespan Respite Care Program (LRCP) that provides grants to state agencies to maximize existing resources and ensure that respite is available and accessible to family caregivers by establishing or enhancing statewide respite systems. We have been very successful in district visits so far. Diana Hardy, an active Government Relations Committee member in Orange County, met with Congresswoman Loretta Sanchez who is also a member of the MS Caucus. She was very amenable to NIH and CDMRP funding because she recognizes that as our country's population ages, we will need to understand, manage, and cure certain diseases, not just MS. MS Activist Rachel Chapman met with Congressman Juan Vargas and found him to be supportive of our issues. The positive responses from these initial meetings only make us hopeful of putting an end to MS forever.


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MS connection: SUMMER 2013

research

Progress on ms therapies by Megan Weigel, CNP, ARNP-C, MSCN

In 1993, Betaseron was released to market as the first disease-modifying therapy for multiple sclerosis. With the approval of oral dimethyl fumarate (brand name Tecfidera™) by the U.S. Food and Drug Administration (FDA) in March, 2013, we now have 10 diseasemodifying therapies to treat relapsing forms of MS—and more on the horizon. Tecfidera is the third oral therapy approved to treat MS. A related compound, called Fumaderm (dimethyl fumarate and fumeric acid esters), has been used for decades in Europe to treat psoriasis. Tecfidera is a new and different formulation of dimethyl fumarate developed by Biogen Idec specifically to treat MS. Although its exact mechanism of action is not known, it is thought to inhibit immune cells active in MS and may even protect against damage to the brain and spinal cord. Two large phase III studies (the DEFINE and CONFIRM trials) found that Tecfidera significantly reduced relapses and disease activity as detected by MRI. The most common side effects were flushing of the skin and gastrointestinal upset. Before starting treatment, the FDA recommends a recent (within six months) blood cell count, repeated annually thereafter.

The MS Emerging Therapies Collaborative, which includes the Society, provides downloadable information sheets at www.mscoalition.org/emergingtherapies to facilitate communication between doctors and people with MS about newly approved treatments such as Tecfidera. Here are potential therapies to keep an eye on as we move forward into 2013 and beyond. Alemtuzumab, a monoclonal antibody that depletes circulating immune (T and B) cells thought to be responsible for MS attacks, would be administered by IV infusion for five days and then for three days one year later. Genzyme applied to the FDA for approval of alemtuzumab to treat relapsing MS, based on positive results from several clinical trials, including one that showed a 55% decrease in relapses compared to interferon beta-1a (Rebif ); however, the FDA asked the company to resubmit its application, so a timeline has not yet been established. While this therapy is powerful against MS, there is concern regarding adverse events, such as immune thrombocytopenic purpura (ITP, a bleeding disorder), and autoimmune thyroid disorders.


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Laquinimod is a once-daily oral immune modulator that showed in phase III studies to decrease relapse rates, though not as robustly as investigators had hoped. This drug is about to be tested in another phase III study in 1,800 people with relapsing-remitting MS. Daclizumab and ocrelizumab are two other monoclonal antibodies currently under study, with favorable results thus far. A highly concentrated liquid formulation of daclizumab is under study in relapsing-remitting MS. Experimental ocrelizumab, given intravenously, significantly reduced disease activity on MRI scans in a study of 218 people with relapsingremitting MS. One person died due to brain edema; however, the relation of this death to the medication is unclear. Additional research, now going on in primary-progressive MS and relapsing-remitting MS, is needed to further determine ocrelizumab’s safety and benefits. Research is also underway on potential treatments for progressive forms of MS and the International Progressive MS Collaborative, of which the Society is a member, plans to do all it can to speed the development of those treatments. Current clinical trials include natalizumab (Tysabri), fingolimod (Gilenya) and ocrelizumab.

Making choices When we consider treatment now, in particular the possibility of switching therapies, we weigh the safety and efficacy of our older, injectable disease-modifying agents against the seeming convenience and perhaps superior efficacy of newer agents. The sequencing of therapies is

19 a new consideration, as well, as the effects of medications like natalizumab and fingolimod on the immune system may be prolonged. Questions about new therapies may mean longer or more frequent appointments with neurologists to discuss their risk-benefit ratios. Additionally, people with MS may choose to see an MS specialist, or be referred to one by a general neurologist, for treatment recommendations. However, the most encouraging part, in addition to the fact that treatments for MS may be getting more effective, of course, is that the research pipeline is full. Thanks to those who are committed to research funding, science is able to continue searching for the cure, and on that search, discover medications that will keep this disease as quiet as possible. To follow progress on potential MS therapies, sign up for MS eNEWS at nationalMSsociety. org/signup, or visit nationalMSsociety.org/ research. Megan Weigel is a Doctor of Nursing Practice and MS Certified Nurse who has been caring for people with MS for 12 years. This article was originally published in the North Florida Chapter’s MSConnection newsletter.


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MS connection: SUMMER 2013

FUNDING THE MISSION

ANNOUNCING the 2013 Carol & Bob Webster Memorial Scholarship Fund Recipients For over 30 years, VIMS (Volunteers In MS) has been raising funds and awareness for the National MS Society. The late Carol Webster started the group in 1981 as a tribute to her husband Bob who had been diagnosed with MS. Since then, VIMS has contributed over $500,000 to the Chapter, primarily the Bob Webster Scholarship Fund, assisting people with MS and their children in pursuit of a college degree.

Congratulations to our 2013 Carol & Bob Webster Memorial Scholarship Fund Recipients:

To honor the legacy of this amazing couple, the chapter is pleased to announce that the fund has been renamed to Carol & Bob Webster Memorial Scholarship Fund. This year we are pleased to provide $19,000 to 12 local senior high school scholars and another 421 scholars were awarded nationwide.

Christina Sanchez

These deserving scholars shared personal experiences in their written applications. One applicant stated, “To assume responsibility for another’s life has allowed me to become a rock for others and made me realize that it’s how you respond to circumstances that will come to define your character.” Special thanks to VIMS, the McGrory Family Foundation and private donors for supporting this program. If you would like to fund a scholarship for deserving students impacted by MS, please contact us at (800) 486-6762. To learn more about our national scholarship program and how you can apply, visit http://tinyurl.com/MSscholarships2013.

Geneva West Clairemont High School, San Diego

Olivia Guiliana Arnold O. Beckman High School, Irvine

Alexander Salazar Helix High School, La Mesa Huntington Beach High School, Huntington Beach

Nicholas Giangregorio Edison High School, Huntington Beach

Rachel Peters Mt. Carmel High School, San Diego

Christian Canter Huntington Beach High School, Huntington Beach

Rachel Cornelison Aliso Niguel High School, Aliso Viejo

Julia Hiserodt Marina High School, Huntington Beach

Russell Taylor Laguna Hills High School, Laguna Hills

Delara Ostowari Canyon High School, Anaheim

Caitlyn Filippone Ramona High School, Ramona


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VOLUNTEERS MAKE IT HAPPEN

SERVE WITH LIBERTY Last year, one of our community partners, Liberty Mutual Insurance celebrated its 100th anniversary by launching “Serve With Liberty.” Thousands of employees around the world spent a week volunteering in their communities by painting, serving meals, cleaning, completing clerical tasks and more. Due to the great success of the service week for both the employees and the organizations they serve, Liberty Mutual Insurance is returning for yet another week of service on June 17-21, 2013. Last year, the MS Society was fortunate to have six “Serve With Liberty” volunteers and on Friday, June 21 the Pacific South Coast Chapter will be hosting another group of “Serve With Liberty” volunteers as they assist with Walk MS prize mailings, assembling Programs & Services packets and much more to help us prepare for our fall events. To learn more about getting involved as a volunteer, whether individually or as a group, contact Linda at linda.ingram@nmss.org or (760) 448-8416.

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Visit www.msrelapseprogram.com or call 1-877-219-0410 to learn about a local live program near you. Complimentary meal and parking will be provided.

Remember: You and a guest are welcome at this FREE educational session. All MS relapse therapy decisions should be made under the guidance of your healthcare professional. ©2013 Questcor Pharmaceuticals, Inc. PM-863-00 02/13

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Thursday, August 1: Teleconference - Intimacy & Family Planning Saturday, August 17: Moving Forward: Program for the Newly Diagnosed September 27-29: Challenge Walk MS

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October 19 & 20: Bike MS Bay to Bay Tour

See more events and programs at http://calendar.MSpacific.org.

Classifieds FOR SALE: Wheelchair Invacare Pronto Surestep M51 wheelchair. Purchased 5 years ago. Very good condition. Red. $500 negotiable. For more information, contact Penelope at (619) 670-8103.


MSConnection Summer 2013